Podcasts about curesma

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we asked the attendees at AFP's annual conference, AFP ICON, to share their experiences navigating fundraising during uncertain times. These fundraisers reflect on the challenges they've faced and how they've demonstrated resilience in the face of adversity. Tune in to hear stories of perseverance, creative problem-solving, and the strategies that helped them not only survive but thrive through difficult moments, reinforcing that even in times of uncertainty, we can emerge stronger and more impactful. Guests: 1. Sarah Brown Rankin 2. Daa'Iyah Rahman 3. Amy Parker, CFRE 4. Caitlin Scanlan 5. Ryan Zapolski, CFRE 6. Marcy Heim 7. Catherine Hann, MBA, CFRE 8. Enzo Duit 9. Patricia Okolo 10. Brittany Connor, Ph.D. 11. Matthew David Gellin, CFRE 12. Lane Buttons 13. Mandi Cambre, CFRE 14. Rene Dillard 15. Salvatore Salpietro 16. Tanya Frey, J.D. Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The Emerging Leaders Podcast, our 2025 Outstanding Young Professional award recipients share the strategies that led to amazing fundraising results, as well as the personal career moves they've made that have set them up for success. Their advice serves as a blueprint for emerging leaders unsure of how to take their career to the next level.   Abby and Brian will be honored at AFP ICON 2025 in Seattle, April 27-29.  Guests: Brian Marquez, development officer at the Southern Scholarship Foundation: Starting as a development coordinator at Elder Care Services (ECS) in Tallahassee, Brian introduced initiatives such as a quarterly impact report that highlighted to donors the valuable role their contributions played in creating positive change at the senior service agency. These stewardship-focused efforts resulted in increased donor retention, including inspiring one donor to triple their gift from the previous year. As a queer Latino, Brian's leadership at ECS extended beyond fundraising. While chair of ECS's Diversity, Equity, and Inclusion Committee, Brian launched an effort to translate materials into Spanish, and secured SAGE certification for ECS, ensuring the organization was a welcoming and affirming space for LGBTQ+ seniors. While the industry as a whole continues to struggle to retain and recruit new donors, Brian is defying trends with a focus on meaningful donor engagement that has contributed to a 5% increase in retention, a 7% increase in first-time donors, and a 17% increase in monthly donors. His use of automated, segmented campaigns celebrating donor milestones and personalized welcome campaigns for new donors reflect Brian's ability to embrace new technology in fostering relationships. Beyond his professional achievements, Brian has made a profound impact as a volunteer and advocate. As president of the AFP FL, Big Bend Chapter, he has significantly increased attendance and engagement by fostering collaborations with local nonprofit leaders. Additionally, he is deeply committed to advancing LGBTQ+ equality, serving on the board of Equality Florida and contributing to policy initiatives through the City of Tallahassee Mayor's LGBTQ+ Advisory Council. Abby Trahan, MPA, CFRE, development officer II, at the University of Houston: In her first professional role as annual giving coordinator for the Houston Food Bank, Abby grew the monthly giving program by 60%, generating $3 million in dependable annual revenue with a remarkable 96% donor retention rate. Beyond the numbers, she created a culture of gratitude and stewardship through innovations such as a new tool for tracking donor touchpoints and a cross-departmental letter writing day to personally thank donors. In her successive roles as development officer I and II for the University of Houston, Abby has significantly expanded the organization's capacity to attract and retain major donors, resulting in multiple six-figure gifts, including a $1 million commitment, as well as the University of Houston Law Center's first endowed professorship during the current dean's tenure. Her talents extend beyond major gifts, also facilitating a peer-to-peer campaign that raised $113,000—the highest in four years. As an active member of AFP since 2018, Abby has demonstrated her leadership at the chapter level, serving as communications chair for National Philanthropy Day and mentoring emerging professionals through the Greater Houston Chapter's Collegiate Chapters program. Abby also earned her Certified Fund Raising Executive (CFRE) credential just three years after joining the profession, showcasing her commitment to her future career in fundraising. Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, Keith Greer and Carissa Konesky, two presenters from AFP ICON 2025, offer tips for overcoming imposter syndrome, submitting a proposal that gets selected, and engaging your audience with an interesting session. We discuss how presenting at an AFP event can boost your career and increase the visibility of your organization's fundraising efforts.   To learn more, check out their session, From Inspiration to Implementation: Turning Conference Insights into Action, at AFP ICON 2025 in Seattle, April 27-29.  Guests: Keith Greer, CFRE: University of New Mexico Foundation - Director of Development: Keith Greer, CFRE is Director of Development for the UNM School of Architecture + Planning and host of the podcast, Let's Talk Fundraising. With over a decade of fundraising experience, Keith has lead fundraising for Hawai'i Island's largest hospice organization and was the Director of the ASRT Foundation with work reaching around the globe. Keith is an AFP Chamberlain Scholar as well as an ASAE NextGen Award Winner. Carissa Konesky, CFRE: Simon Fraser University - Advancement Officer, Leadership Giving: Carissa Konesky, CFRE is based in British Columbia, Canada and works as an Advancement Officer for Leadership Giving at Simon Fraser University. Her passion is building relationships with donors and sharing the causes that she cares about. She holds a Bachelor of Arts Degree and Nonprofit Management Certificate from SFU, an Associate of Arts Degree from Capilano University, and Associate Certificates in Nonprofit and Fundraising Management from BCIT. She participated in Cohort Four of the AFP Leadership Institute, and has been featured in BC Business magazine as a Top 30 Under 30 and Woman of the Year - Rising Star.   Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

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In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we discuss the challenging power dynamics that can exist between donors, and ourselves as fundraisers. How do characteristics such as race, gender, sexuality, or age impact how we are perceived and treated by donors? AFP ICON 2025 speakers Laurel McCombs and Robert Osborne share the strategies they've learned over the last four years of presenting on this topic, providing emerging leaders and fundraisers of all career levels with a toolkit for navigating challenging situations and continuing the conversation at their organizations and throughout the sector. To learn more, check out their session, Navigating Power Dynamics in Fundraising, at AFP ICON 2025 in Seattle, April 27-29.  Guests: Laurel MCombs: Laurel McCombs brings more than 20 years of experience in the non-profit sector and a passion for the role philanthropy can play in changing the world to her work as a consultant and trainer with The Osborne Group. Laurel is a well-known speaker presenting well-received workshops for national organizations, universities, as well as AFP ICON, CASE-NAIS, Nonprofit Association of Oregon, and AFP Congress. She works closely with clients on a variety of topics, including donor retention, development operations, planning, donor management, board development and more. Robert Osborne: Robert is Principal of The Osborne Group, with 30 years of nonprofit experience. He speaks regularly nationally and internationally. Robert serves on the boards of the United Hospital Fund and US Squash, both in New York. He also serves on the International Advisory Board of the Czech Fundraising Center in Czech Republic, the International Advisory Board of the Impact Hub Belgrade in Serbia, and the Advisory Board of the Impact Hub Metropolitan in New York. He is a studio partner and co-founder of Studio X Ventures, a venture studio for social impact startups in the Western Balkans. Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The Emerging Leaders Podcast, nonprofit digital consultant, AFP ICON speaker, and author, Julia Campbell, discusses how nonprofits can be effective storytellers in the digital world. She shares the trends she is seeing, such as the success of short form educational video content and the role of AI in content creation, plus how emerging leaders can advocate for digital innovation at their organizations. Guest: Julia Campbell: Named as a top thought leader and one to follow by Forbes and LinkedIn for Nonprofits, and one of the 30 Nonprofit IT Influencers to Follow in 2024, Julia Campbell is a wealth of knowledge when it comes to designing social media and storytelling strategies that help nonprofits share their mission across the digital landscape.  An international keynote speaker and host of the acclaimed Nonprofit Nation podcast, she's written two books for nonprofits on social media and storytelling, and her online courses, webinars, and talks have helped hundreds of nonprofits make the shift to digital thinking. Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we sit down with the chief data officer for GivingTuesday, Woodrow Rosenbaum. He shares with us the trends from the Q3 2024 Fundraising Effectiveness Project report and how fundraisers can make practical use of this data in their fundraising strategies. Download the Q3 Report.  Guest: Woodrow Rosenbaum: As Chief Data Officer for GivingTuesday, Woodrow has been instrumental in shaping the global generosity movement and has led ground-breaking research and analysis of individual giving behaviors. He leads the GivingTuesday Data Commons, bringing together a coalition of more than 1,000 collaborators coordinated through eight working groups as well as data teams in 50 countries to understand the drivers and impacts of generosity to inspire more giving of all types. Woodrow brings expertise in moving markets and transforming audiences from passive participants to active and vocal ambassadors. Woodrow is also the founder of With Intent Strategies, an international agency specializing in brand reimagination. Woodrow is a member of the Generosity Commission Research Task Force, is a past Co-Chair for Global Impact Canada's Board of Directors where he now serves as strategic advisor, and was previously a Fellow at the Belfer Center for Science and International Affairs at Harvard Kennedy School. Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, fundraisers from across the sector reflect on their most inspiring wins of 2024. From record-breaking campaigns to transformative donor relationships, these stories highlight the creativity and resilience driving the profession forward. Tune in for a dose of motivation as you gear up for the crucial year-end giving season. Guests:  Catherine Hann, MBA, CFRE Olu Burrell, MSOD, PCC Brianne Gerzevske, M.A., CFRE Eileen Schuetz, MNPL Harriott Parker Jillian Netherland, M.S., CFRE Michael Buckley, CFRE Maggie Kebler-Bullock, CFRE Michelle Cramer Allison Strekal, CFRE, MBA Nicole Tafoya Rochelle Jerry Bobby Naimark Domitille Marchal Lemoine, CFRE Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we asked the attendees at AFP's annual leadership conference, AFP LEAD, to share with us their best advice for how to give and receive professional feedback. Members from all generations and career stages share how to ensure that the feedback we're giving and receiving is constructive, and beneficial for career growth. Thank you to all of our contributors:  1) Sonya Perez-Lauterbach 2) Daniel Minich 3) Allison Strekal  4) Sarah Cortell 5) Terrance Hunter 6) Sonya Hollins 7) Alexandria Gates 8) Eileen Schuetz 9) Jessica Frantz 10) Catherine Hann 11) Meghan Metzger  12) Nicole Tafoya 13) Justin Kuczma   Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we discuss the difficult questions we ask ourselves when we're contemplating leaving a job: Can I get a bump in salary at my current organization? What am I really looking for out of a job change? Do I have the right skills to apply to a new position? How do I balance pursuing my passion with setting appropriate work/life boundaries? Derek Mulhern, CEO & executive leadership coach at Derek Mulhern Coaching & Consulting, shares how to evaluate the pros and cons and make the career move that's right for you. Guests:  Derek Mulhern, PCC, ACCC  – Executive Life & Leadership Coach The son of a dairy farmer in Fountain, Minnesota, Derek was raised in a family that valued perseverance. From a young age, he understood the importance of ambitiously creating his future. Derek started his training and coaching career working with college students. He championed them to unlock their potential by creating powerful connections and fearlessly speaking truth. When he moved to Washington, DC, he brought these leadership skills and coaching goals to the nonprofit sector. Derek knows how to manage and transform individual contributors to be part of productive, high-functioning teams. During his time in the nonprofit sector, Derek observed various leadership styles to build an approach that acknowledges how decision-making impacts the team. He has seen first-hand how effective leaders build teams who generate creativity, impart their passions, and strengthen their organizations. Drawing on his rich experience in the nonprofit sector, Derek's career in coaching aims to help leaders and executives create unstoppable organizations that shape the future of work, rather than simply reacting to it. Derek believes in the power of transforming relationships by transforming yourself – and he wants to help you see that power, too.   Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.    

In this episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we look at generational differences and how they factor into our fundraising. How can emerging leaders help our organizations connect with Gen X, Millennial, and Gen Z donors? Hosts Emily and Allison are joined by Abbi Haggerty, Sara Greene, Annie Rae Carlton, and Miranda Huffer, a multi-generational development team at the Richmond Performing Arts Alliance.  Guests:  Abbi Haggerty  – Executive Director  Abbi was named Executive Director of Richmond Performing Arts Alliance in 2019 after serving the organization in senior-level development roles. With more than 20 years of experience in the nonprofit sector, Abbi has expertise in organizational management, strategic planning, community engagement, fundraising, governance, and program design. In prior positions, she worked for VMFA, Museum of Science & Industry (Tampa, FL), Brightpoint Community College, and Partnership for Nonprofit Excellence. Abbi earned her bachelor's degree in political science and history from Virginia Tech and master's degree and Ph.D. in public policy and administration (with a concentration in nonprofit management) from VCU.  She is currently an adjunct assistant professor at University of Richmond in the Nonprofit Studies master's degree program and received the Itzkowitz Family Distinguished Adjunct Faculty Award in 2023. Abbi is Past Board President of AFP-Central Virginia and chairs the Korn Ferry Emerging Leaders professional development webinar series for AFP Global.    Annie Rae Carlton – Development Manager Annie Rae began her nonprofit career in Georgia before moving to Richmond in 2019. During the early stages of the pandemic, she shifted her focus from non-profit administration and operations to development. She now serves as the Development Manager for Richmond Performing Arts Alliance, overseeing grant writing and special events. In collaboration with the Development Team, she works to meet fundraising goals and secure essential support for RPAA's diverse programs and events. Annie holds a BA in Sociology from the University of North Georgia.   Sara Greene – Director of Development Sara has worked in the nonprofit sector for over 20 years. She joined the RPAA team in April, 2013 and has held several titles throughout her tenure with the organization. In her current role as Director of Development she oversees RPAA's overall fundraising strategies and the work of the Development Team and Associates Board. The Team works collaboratively to meet contributed revenue goals that sustain the work and mission of RPAA through the Annual Fund, grants, corporate sponsorships, special events, the endowment, and more. She holds a BA in Sociology from the University of Mary Washington.   Miranda Huffer – Development Coordinator & Board Liaison (They, Them)  In their role at RPAA, Miranda manages donor data and communications as well as board logistics while also providing support to the development team on events, grants, and other fundraising needs. Since joining the team in 2023, Miranda has collaborated with the development team to expand RPAA's fundraising capabilities and find new and effective techniques for fundraising and board engagement. They graduated from William & Mary with a degree in Sociology and American Studies, and have been working in non-profit development for over two years.   Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.    

In this first episode of Rising Voices of Fundraising: The AFP Emerging Leaders Podcast, we break down the myths, stereotypes, and feelings of imposter syndrome that emerging leaders and BIPOC fundraisers commonly face. Mojdeh Cox and Michelle Flores Vryn, CFRE join hosts Emily Leitzinger, CFRE, CNP and Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP to share their moments of doubt and the steps they've taken to embrace their personal and professional potential.  Guests:  Mojdeh Cox, Principle, Cox and Co.: Mojdeh Cox brings people together to have challenging conversations around complex issues and develop and execute action plans. For over a decade, Mojdeh has coached organizational and community leaders, businesses, and nonprofit organizations re-imagining their work through a heightened equity lens. Mojdeh speaks, writes, and provides media commentary on issues impacting communities.     Michelle Flores Vryn, CFRE, Head of Development, iNaturalist: Michelle Flores Vryn, CFRE (she/her/ella) has 15 years of nonprofit experience, raising funds for climate change and biodiversity, education, and civic engagement. She has worked in all facets of development: major gifts, institutional giving, membership, capital campaigns, consulting, special events, and annual giving.  Michelle sees herself as a lifelong learner, disruptor, and cross-sectoral community-builder. Michelle is passionate about supporting and mentoring Black, Indigenous and People of Color (BIPOC) nonprofit professionals and creating better workplace cultures where they can thrive. She is a proud board member of Mission Capital and AFP Global. When not at work, Michelle enjoys watching beauty and makeup tutorials on YouTube, meditating, enjoying local trails and spontaneously dropping in on live music around Austin.   Hosts:  Emily Leitzinger, CFRE, CNP, Director of National Leadership Giving, Cure SMA: Emily Leitzinger is a fundraising executive with over 15 years of experience driving organizational growth and sustainability through innovative fundraising strategies and donor engagement. She currently serves as the Director of National Leadership Giving at Cure SMA and is particularly proud of launching the first-ever Legacy Society for the organization. Emily is dedicated to advancing equity and inclusion in philanthropy, as noted in her Master's capstone. In this project, she examines the effects of donor influence on nonprofit operations and proposes frameworks for more balanced and ethical donor engagement. A chartering member and past president of the Mid-City, New Orleans Rotary Club, Emily is affectionately known as the Deputy Governor of "Yes" and is set to become the District Governor of District 6840. In addition to her professional achievements, she enjoys traveling, long-distance running, and craft beer, and is a huge fan of The Office.  She lives in New Orleans with her Elvis-impersonating husband, Mike.    Dr. Allison Quintanilla Plattsmier, CFRE, ACNP, GPC, CAP, Founder & CEO, AQP Consulting & Executive Director, ENP: Dr. Allison Quintanilla Plattsmier has fourteen years of experience in the nonprofit sector and has collectively raised approximately $5 million for over 75 organizations. She serves as Executive Director of ENP and runs her own nonprofit consulting firm, AQP Consulting, where she helps grassroots nonprofits with fundraising strategy, strategic planning, board development, and grant writing.  Allison is a vocal advocate for gender parity, closing the wage gap, and ending the motherhood penalty. With accolades such as AFP's Outstanding Young Fundraising Professional, NBJ's 40 Under 40, NBJ's Women of Influence, a National Latino Leader, and the Women Who Rock Nashville Social Justice Award, Dr. Quintanilla Plattsmier strives to serve and better her community every day. A dedicated AFP member for the last seven years, Allison currently chairs the Women's Impact Initiative (WII) Mentorship Program and serves on the LEAD Education Advisory Committee. When she is not out serving her community, she is spending time with her three kids, Quintan, Karina, and Kamren.    

It seems obvious that peer-to-peer fundraising events would be designed with the organization's missions in mind. However, amidst the critical logistics decisions, competing messaging priorities and the influence of multiple stakeholders, prioritizing a mission-centric approach can inadvertently take a back seat.In this episode, Cure SMA's Jesse Aynes & Kyle Houlihan join P2PPF's Marcie Maxwell for a conversation on the importance of leading with a mission-first strategy. Kyle & Jesse will share how their team is expanding the Walk-n-Roll community by engaging direct mission providers and tell the story of how they launched a new on-site mission experience - and what they learned from it.In this episode, we'll also explore:- The importance of a consistent branding & mission experience - and the distinction between the two- How their program is evolving to meet the needs and share the stories of the SMA community- The full-circle impact of the Walk-n-Roll program on Cure SMA's missionMentioned LinksCure SMACure SMA Walk-n-RollOn Social: Facebook, Instagram, LinkedIn, YouTube & Twitter/XStay Connected on LinkedInConnect with JesseConnect with KyleConnect with MarcieConnect with the Peer-to-Peer Professional Forum (00:00) - Welcome to The P2P Soap Box (03:34) - Introducing Jesse & Kyle (07:25) - About SMA (10:40) - Igniting the community around the mission (17:58) - The Care Center Network (32:33) - Facing Better Problems (37:35) - Learn More

Steven Sashen is the visionary, marketer, and CEO of Xero Shoes. He is a Masters All-American sprinter (one of the fastest men over the age of 50 in the US) and former All-American gymnast. He was also a professional stand-up comic, cognitive psychology researcher, and taught Tai Chi and Zen Archery. He started Xero Shoes after drawing inspiration from reading Born to Run and experiencing first hand the power of running barefoot.  It wasn't until he suffered constant running related injuries in regular shoes when he was recommended by a friend to read Born to Run and  noticed that running barefoot eliminated his injuries.  He looked to the Tarahumura Runners and developed his very own huaraches running sandals.  From there, well the rest is now history as Xero Shoes were soon after created for everyone to now engage in the barefoot experience. ATTENTION:  Through your donations, subscriptions, likes, mentions, recommendations, and downloads we can keep this podcast alive and going while also providing charity to the Muscular Dystrophy Association (MDA), Cystic Fibrosis Foundation (CFF), and Cure SMA (Spinal Muscular Atrophy).  We will donate 25% of all proceeds to these associations in an effort to bolster their ongoing research and provision of patient resources.  Thank you for all of your help.  Get It Ra appreciates all that you do.   To donate and become a Show Patreon Member click here https://www.patreon.com/GetItRa  Watch on YouTube at https://www.youtube.com/channel/UCdwttRw4sudrGN6u3Gf1Myw/videos  Follow us on Facebook at https://www.facebook.com/Get-It-RA-363158217990024  Follow us on Twitter at https://twitter.com/GetItRA_Podcast  To donate to Cure SMA click here https:https://donate-curesma.donordrive.com/index.cfm?fuseaction=donate.event&eventID=532 To donate to the Muscular Dystrophy Association click here https://mda.donordrive.com/index.cfm?fuseaction=donate.event&eventID=824&referrer=topdonatebutton%20mdaorg  To donate to the Cystic Fibrosis Foundation click here https://www.cff.org/give-monthly 

Episode Notes On episode 331 I sit down with my guest Maylan Chavez as we explore her experiences with Spinal Muscular Atrophy; we talk about advocacy, intimacy, CureSMA, her love of Fall Out Boy & so much more. Enjoy!  Follow Maylan at www.instagram.com/maythesunrise Follow me at www.andrewgurza.com Episode Sponsors Clone-A-Willy or Clone-A-Pussy all your own and get 20% off sitewide by using coupon code DARKPOD at Checkout. www.cloneawillycom.  Get 15% off your next purchase of sex toys, books and DVDs by using Coupon code AFTERDARK at checkout when you shop at trans owned and operated sex shop Come As You Are www.comeasyouare.com  Support another great Disability themed pod! Listen to You First: A Disability Rights Florida Podcast.  GET YOUR TIX TO THE NEW PRODUCTION ALL ABOUT SEX AND DISABILITY, ACCESS ME, IN TORONTO JUNE 16-24, 2023 AT WWW.ACCESSME.SQUARESPACE.COM  Get Your Tickets to See Me Live @ SexTechTo Mixer on June 27th.  More Info at www.sextechto.com  This podcast is powered by Pinecast.

In episode 126, host Kevin Schaefer talks with Janelle Fiesta and Antoine Vuong from Honolulu, Hawaii. They are an interabled couple who met when they were both in high school. Janelle shares her experiences living with SMA and Antoine talks about being her partner. They also discuss going to the 2022 Cure SMA conference in Anaheim, California. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

Hoboken resident Alexandra Lakhman was crowned Miss New Jersey USA on April 3, 2022. She competed in six Miss New Jersey USA pageants before taking home the crown. We discuss what the competition entails, the process of preparing both mentally and physically for the pageant, and what life is like as Miss NJ USA. We also discuss causes close to her heart. Her brother, Joe Lakhman, suffers from spinal muscular atrophy (SMA), and Lexi has taken up the helm as the communications chair for the New Jersey chapter of Cure SMA. Also, as a first generation Ukrainian-American, the conflict in Eastern Europe is something she is trying to bring awareness to. Alexandra Lakhman: @missnjusa @alexandralakhmanCure SMA: @curesmanjhttps://missnewjerseyusa.com/https://www.curesma.org/Thank you to our sponsors:Albert & Whitney CPAs:  awcpasllc.comContact the show: mike@greetingsfromthegardenstate.comSupport the show

RARE MAMAS RISING- EPISODE 018 Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager, & Rare Mama Danyelle Sun   August is spinal muscular atrophy awareness (SMA) month, and in honor, my guest is SMA mom Danyelle Sun. Danyelle has served Cure SMA as a board member and Wisconsin chapter officer, building community and championing a better future for people living with SMA. Currently, she works as the Cure SMA Social Work Manager, providing support to families, educating elected officials about SMA, and advocating for newborn screening. Not only is Danyelle a passionate advocate for the SMA community, but she's also a dedicated advocate for the entire rare disease community. She serves as the Wisconsin Rare Action Network® Volunteer State Ambassador and has successfully built a strong network of over 280 advocates throughout Wisconsin. She works tirelessly with state legislators and their staff on numerous policy initiatives affecting the rare disease community. Danyelle is making such an impact on the rare disease community that in 2021 she received the NORD Rare impact award. Danyelle is a dedicated awareness-builder, a hard-working advocate, and a true changemaker. In this episode, Danyelle uses her ten years of experience to help us grow as advocates and elevate our advocacy.       EPISODE HIGHLIGHTS The journey to an SMA diagnosis for Danyelle's two children, Ruby and Landon Tips on how to become stronger awareness builders Resources and action ideas on how to engage in state advocacy How to effectively utilize a social worker's support and resources Expecting and awaiting goodness     LINKS & RESOURCES MENTIONED   https://www.curesma.org/ https://rareaction.org/ https://everylifefoundation.org/ https://globalgenes.org/ https://rarediseases.org/ https://www.rarediseaseday.org/ https://familyvoices.org/ https://www.ndrn.org/     CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com      

In episode 109, host Kevin Schaefer chats to several attendees from this year's Cure SMA conference in Anaheim, California. Ashley Fox, Ryan Manriquez, and Kyle Harris discuss reuniting after such a long time, connecting with other adults with SMA, and share their highlights from the conference. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

Surviving child loss seems insurmountable most days for grieving parents.  But what happens when the unimaginable happens to your family again?  Emily Bessey shares her heartbreaking journey of losing her son Ezra to a genetic and terminal disease called spinal muscular atrophy, and her family's focus to raise awareness and funding for a cure through their amazing foundation called Hearts for Ezra. Less than two years later, the family suffered a second tragedy with the death of their son, Leo, to stillbirth. Emily talks candidly about what she has learned about herself while walking beside grief. Her story will inspire you. Learn more about Spinal Muscular Atrophy,  and how you can be part of the cure at CURE SMA. And if you need a smile, follow Emily's delightful podcast called The Real Truth with Amy and Emily where, she says, she gets to be her silly self now and again!  Holding the Light is an original, twice-monthly podcast  (the 1st and 15th of every month) created and hosted by Monica and Colby Charette, and produced by Julia Vigue.  EMAIL US with questions, comments, or a request to join us as a guest. We also welcome you to visit us at ShineOnCass where our family continues to Shine the Light of Cassidy.Our podcast's theme music is As Long As You Love (Scarlet Wings) written and sung by Cindy Bullens, from the album Somewhere Between Heaven and Earth, produced by Blue Lobster Records (1999). Available on CD or download at www.cidnybullens.com. Mention Holding the Light Podcast and receive a signed copy.

This March at Small-Minded has been all about badass women, and I couldn't let the month pass without inviting my friend and sister-in-law, Amanda Schlemme, to the the podcast.   We're both “old” now as we joke throughout the podcast, but back in the late 00s as I was in college and first dating my now-husband, his sister Amanda was living a fabulous big-city life in the Twin Cities (Minnesota). She did the whole high-heels-every-day, great Banana Republic outfits, CPA thing, and loved it. And I loved when we could get up there and visit! Amanda has always been such a role model to me, but as we've grown older and wiser, I admire her more and more every passing day.   Our family has been through some STUFF to say the least, and as a result by the early 2010s Amanda, her husband Travis, and their family moved back to Cascade, our hometown. We are SO grateful to have her here, for a wealth of reasons:   First off, she's my accountant- and she is brilliant. She keeps me on top of my Quickbooks (thank God), organizes SO MANY freakin' forms for me, and fields all of my “what does this mean?” questions about numbers and government agencies.    Okay, so having a CPA for a close friend is AWESOME, but that is just a small part of this amazing woman.    Amanda is a Swiss army knife, listeners. She's a key part of the family farm, she and her husband own and operate the local tavern and eatery, she chairs the board of the one of the coolest camps ever, and her efforts over the years have contributed to the community in such a big way.   We could have talked about a million things in this episode, but oops! We ended up spending almost the whole episode on just one particular part of her life, which happens to be my personal favorite thing about Amanda - how dedicated she is as a mom. She has two incredible sons earthside, one of whom has Spinal Muscular Atrophy (SMA). At just 14 months old back in 2009, Amanda's son Colin was diagnosed with SMA type 2. This diagnosis not only dramatically altered the trajectory of Amanda's life, but it allowed her to take on big things that have a lasting ripple effect for hundreds of families of SMA.    I will definitely need Amanda back for a Part 2 because I just know you will LOVE this episode, my friends. Key Takeaways After college at University of Northern Iowa Amanda worked as a CPA in the Twin Cities. It was a bit of a culture shock but they carved out a little space in the city and made friends that became family. Amanda loved learning about how different companies worked. Amanda is the mom to two boys: Eli and Colin. Colin had an appointment with a neurologist when he missed some milestones by 15 months old. He was diagnosed with SMA, which at that time, had no cure or treatment. She was told he would never walk, and to not look at the Internet for additional information. She made it two days before she deep-dived online, learning everything she possibly could. She has been such an amazing advocate for Colin, and SMA, ever since. The family made the move back to Cascade where Amanda works with the family farm and businesses including Bale Barn and Two Gingers Tavern and Eatery.  Amanda chairs the board at Camp Courageous in Monticello, Iowa. They offer year-round camps and respite care for people with disabilities. Colin looks forward to MDA (Muscular Dystrophy Association) Camp every year and has been going since he was six. He gets to zip line, hike, swim, ride the train, and more, with the assistance of Camp and his amazing counselors.  Amanda has brought our community together to raise tens of thousands of dollars for Cure SMA through Small Heroes, Mighty Cause. Since Colin's diagnosis, there are now three options for SMA treatment. Colin is an amazing old soul who loves coffee, gambling, and ESPN. He loves all sports, especially baseball, is very observant, and a great listener. He had a major spinal surgery last year but has recovered well and is in good health today. We're so grateful to have Amanda and family back in Cascade! We definitely need her back on the podcast for a Part 2! Connect with Amanda Amanda has so much going on! She is the board chair at Camp Courageous, organizes Small Heroes, Mighty Cause, and is involved in the family businesses Two Gingers Tavern and Eatery and Bale Barn.  Follow for More Follow Small-Minded on Instagram and Facebook Follow Molly Knuth Media on Instagram and Facebook For more about Social or Business School visit mollyknuthmedia.com/shop. Podcast Sponsor: School is in session! Be the first to know about our spring program offers by signing up at https://bit.ly/mkmspring    Depending on where you are in your small business journey, we have options to meet you where you are and help you grow your woman-owned business this spring.   Social School April's focus is on story telling on Facebook and Instagram! What you get: Marketing assistance and education Short daily, easily digestable trainings  100 story starters to plug and play Canva template packs to customize for our business Monthly Q&A with me (Molly!) Accountability! Three social school “students” with win cash prizes of $222 for sticking with it!   Business School is for women in years two through seven of their business and are ready to scale from startup to sustainable. What you get: Guest “professor” with a focus topic each month Two guest experts (“adjunct professors”) throughout the month with a special focus. Hear from HR professionals to start hiring, attorneys to answer legal questions, and more Bonus 1-on-1 coaching with Molly

SMA News Today's multimedia associate, Price Wooldridge, discusses how screening for spinal muscular atrophy is now available to 87% of all newborns in the United States, according to Cure SMA. After noticing the lack of disability representation during the Olympic Opening Ceremony, DeAnn decided to post about. She shares her views and how she was surprised by the response from her post on the SMA News Today forums. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

SMA News Today's multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for air travel. Plus, Alyssa Silva's recent column hits close to home for DeAnn. She shares her article that talks about how overwhelming SMA medical issues can be and encourages listeners to continue the discussion over on SMA News Today forums. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Nine years ago, when 6 week-old Corey was admitted to the hospital for generalized weakness, everyone assumed that he had some sort of infection. His mother, Stephanie, thought that he would get some medication, maybe some IV fluids and then she would be able to take her little boy home again. On the third day of his hospitalization, however, Stephanie overheard a few residents talking. She heard the use the term, 'SMA' for the first time. A young doctor started a sentence with the words, 'if he lives to 6 months' and 'if he lives to a year.'  Suddenly, Stephanie's life was turned up-side-down. Corey did indeed have SMA (Spinal Muscular Atrophy) and he actually did not live to see 6 months. When Corey was born, a diagnosis of SMA was a death sentence. Only months after Corey was born, clinical trials for a treatment for SMA were developed. Now, that medication is so successful in treating SMA that we are really nearing the day that these children will live with SMA and not die from it. Since Corey's death, Stephanie has done so much to support this cause. She was instrumental in getting SMA testing on the newborn screen in the state of Ohio. She speaks to groups nationally as well. I know that after losing a child, I want to do anything that I can to prevent another parent from feeling my same pain. Stephanie feels the same way and her work has truly helped prevent some many deaths. Today, we talk about her work in the Cure SMA organization, but we also discuss her personal grief journey as well. Stephanie talks about the pain of returning home without her baby boy in her arms. We discuss learning to help her then 5 year old daughter grieve in an open, honest way and the pain that comes with watching our children grieve. Now, so many years later, there are fewer and fewer people who remember baby Corey, and that makes some days even harder than in the beginning. It certainly make those who remember and understand the lasting pain all the more precious.

SMA News Today's multimedia associate, Price Wooldridge, discusses how Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads Alyssa Silva's latest column where she shares about a positive interaction with a child. Odds are that if you're in a wheelchair you've been stared at, or even shied away from. It can be frustrating to say the least. Alyssa has a technique that engages children in conversation to foster acceptance regarding disability. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

You're listening to the voice of Dr. Kathy Swoboda, who is the Katherine B. Sims MD Endowed Chair in Neurogenetics and Director of the Neurogenetics Unit in the Center for Genomic Medicine at the Massachusetts General Hospital and Harvard Medical School. Her research and clinical activities are dedicated to the diagnosis and treatment of inherited motor disorders of childhood-onset, with a particular focus on genotype-phenotype studies documenting onset and timing of progressive denervation in infants with Spinal Muscular Atrophy, also known as SMA.   Dr. Swoboda collaborated closely with Cure SMA in helping to obtain critical data necessary to support the addition of SMA to the Newborn Screening Recommended Universal Screening Panel (RUSP), and with the American College of Medical Genetics and Genomics (ACMG) and Newborn Screening Translational Research Network also known as NBSTRN to build tools suitable for use for newborn screening follow-up for infants with SMA.   In this episode, Dr. Swoboda will describe the important research efforts that led to newborn screening for spinal muscular atrophy (SMA) and how different interventions are impacting the lives of newborns with SMA. Dr. Swoboda has played a significant role in getting SMA to be added to the recommended uniform screening panel (RUSP) and her journey from a clinician to a researcher is truly inspiring. So, listen on.   Interview Questions with Dr. Swoboda: 1. Could you tell us what is spinal muscular atrophy (also known as SMA)? 2. You and your research were involved in SMA being recommended to nationwide screening. Can you describe this experience? 3. How have the families you work with been impacted by the addition of SMA to nationwide newborn screening? 4.  What is the importance of early identification and treatment by NBS. What are current interventions for individuals with the SMA? 5. Why is NBS research for SMA important? 6. How has NBSTRN helped your research in SMA? 7. What career advice could you give to someone interested in being a clinician-researcher like yourself? 8. What does NBS research mean to you? To learn more about newborn screening research, visit www.nbstrn.org

RARE MAMAS RISING- EPISODE 006   Raising Awareness with Cure SMA Advisory Committee Member & SMA Mom Advocate Mary McHale  In this special spinal muscular atrophy (SMA) awareness episode, SMA mom Mary McHale shares learnings from her 20+ years of being a rare disease parent, awareness builder, fundraiser, and advocate. Mary's son Danny was diagnosed with SMA at six months old, and Mary was told that he wouldn't see his first birthday.  Today, Danny is a junior in college. Mary has become a fierce SMA advocate, having sat on the Cure SMA Board of Directors for twelve years and now serving on the Adults with SMA advisory committee. She's also an event leader who has raised over $2 million towards SMA research. In this episode, Mary gives insights into the significance of advocacy and awareness-building efforts, how parents can plug into disease organizations, and the importance of finding hope.   EPISODE HIGHLIGHTS  Can you give us some background on your family and your son Danny?   A neurologist looked at our happy gurgling baby and said, "sit down; he has a condition, it's terminal, and there is no hope." The doctor did give us some information about Cure SMA. We called them that day, and they said, "No, there is hope," and that was the turning point for us on this journey. I've learned you need to ask questions, challenge, and advocate. Learn the law, learn your child's rights, the systems, and the processes so that you can fight for them. Never accept no for an answer.  How did you decide to start building awareness and advocating?  I reached out to Cure SMA and got names and numbers of parents to talk to. I spent hours talking, learning, and tapping into everyone who could help. But it was really hard having to do it all on my own. There wasn't content available. The more I spoke to other people, the more I could feel that I was less alone and less rare. After that, I became the mom that people were referred to talk to. We can make a difference together, and you do that in community. I'm very proud that today all of this information about care protocols, the condition, and support is easily accessed on the Cure SMA website. I'm so proud to make this path easier for everyone.   What advice would you give to other parents about plugging into disease organizations and how to best work with organizations?      It will be your lifeline but do your research, make sure the organizations are legitimate. What is their main focus, how do they spend their money, and are they an organization that will help your child achieve the goals you want for them? Gain help from others. Be specific and tell them how they can help. Provide your community the facts about the progress you're making.   Can you talk about the importance of hope?   It's really been the hallmark of our journey; it's what's fueled us. What we learned was that hope fueled us, but anything else drained and destroyed us. So I do believe that you have to consciously focus on hope. I learned to take things day by day. Enjoy the good moments with your child.   LINKS & RESOURCES MENTIONED  Mary McHale  https://www.linkedin.com/in/marydigginsmchale/  https://www.facebook.com/mary.diggins.mchale  Cure SMA  https://www.curesma.org/  Ionis   https://www.ionispharma.com/  CONNECT WITH NIKKI  Facebook  https://www.facebook.com/RareMamas1/  Instagram  https://www.instagram.com/Rare_Mamas/  Website  https://raremamas.com/  Email  info@raremamas.com     

SMA News Today's multimedia associate, Price Wooldridge, discusses Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about finding community support through this year's Cure SMA virtual conference. Link to Kevin's column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today's multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients. For the second time the Cure SMA conference was held virtually. DeAnn Runge talks about what she gained from the conference. She also talks about her latest YouTube video that shows what's inside a care package from Cure SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: - Apitegromab Put on FDA's Fast Track https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/ - SMA Added to North Carolina's Newborn Screening Program https://smanewstoday.com/news-posts/2021/06/09/sma-added-north-carolina-newborn-screening-program/ - Discussion on the film "Sound of Metal" https://smanewstoday.com/forums/forums/topic/have-you-watched-sound-of-metal/ ================================ Links to columns: - ”Embracing the Growing Pains of New Wheels” by Katie Napiwocki https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/ - ”I'm Taking My Time Returning to Normal” by Brianna Albers https://smanewstoday.com/columns/2021/06/07/taking-my-time-returning-normal/ - ”I Don't Want a World Without SMA. Here's Why.'” by Sherry Toh https://smanewstoday.com/columns/2021/06/09/gene-editing-world-without-sma/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses free tools being offered by Cure SMA to boost the independence of Spinal Muscular Atrophy (SMA) patients. Also, Forums Director Kevin Schaefer reads a column about the realities of living with SMA and managing fatigue. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, and other news stories. Finally, they highlight some recent columns from our main website. ================================ Links to news stories: -Cure SMA offering free virtual therapy sessions https://smanewstoday.com/news-posts/2021/02/24/cure-sma-free-virtual-therapy-sessions/ -Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland https://smanewstoday.com/news-posts/2021/03/10/zolgensma-available-certain-sma-type-1-patients-england-scotland/ -New SMN-boosting Molecule Shows Promise as Add-on Therapy https://smanewstoday.com/news-posts/2021/02/17/new-smn-protein-boosting-molecule-shows-promise-add-on-sma-therapy-study-patient-derived-cells/ -Rare Disease “Patient Hero” Raises Awareness Through Fashion https://smanewstoday.com/news-posts/2021/02/25/tristan-lee-rare-disease-day-patient-hero-raises-awareness-fashion-modeling/ ================================ Links to columns: -”Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability” by Sherry Toh - https://smanewstoday.com/columns/2021/03/03/sma-patients-adaptability-amazing/ -”Hot Air Balloons Adrift: Appreciating My Pulmonary Function With SMA” by Katie Napiwocki - https://smanewstoday.com/columns/2021/03/04/appreciating-pulmonary-function-hot-air-balloons-adrift/ -”Amid the Busyness of Life With SMA, I’m Learning to Embrace Stillness” by Kevin Schaefer - https://smanewstoday.com/columns/2021/03/09/embracing-stillness-amid-busy-life-sma/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

Get ready for THE TRUE NORTH COLLECTIVE℠ PODCAST: SEASON 4! With co-hosts Rachel Bellotti (she/her) and Jenell Riesner (she/her), this is a gathering of un-sugar-coated conversations celebrating the untold stories of everyday people fearlessly finding and living their true north.  In our own search to discover and live from our TRUE NORTH, we continue to meet many interesting, courageous people from all walks of life, doing all sorts of amazing things to live life in their own unique way. Stories from all over the world. Stories with heart. Stories with grit. Stories with plot twists. Stories going untold - until now. This season, we continue to celebrate these untold stories of everyday people who are fearlessly living their true north and inspiring each of us to do the same. Today, we have a special episode inspired by a convo we had in a recent COLLECTIVE, our free monthly community gathering, all about where we place our self worth. We bring on a mash-up of voices together from across the country to unpack this topic as fellow travelers looking to better understand and learn and grow from and with each. Kaity Thompson-Semmelhack lives in Milwaukee, WI. She is a Cycle Program manager at Spire Fitness and works for a non-profit called Cure SMA. Jack Nelms lives in Dallas, TX, and is a Producer/Artist doing the electronica indie genre of music. Lizzie Somabut-Collie is also in Dallas, TX, in the midst of another career transition, amidst a pandemic, and she’s trying to figure out what feels good and fulfilling to her in her career, while ensuring the organization she's with also values her. We talk about external validation vs self-worth, recognizing when our identities are tied to things outside of ourselves, the exhaustion of being a “yes” person, how to know when you’re in self-worth, self advocating, releasing the outcome, when ego + external validation are good, the self-worth muscle, and unconditional self-worth. This conversation invites everyone to explore what it means to live from self-worth and what we do when we inevitably forget.

homilia del padre Carlos.

In episode 76, host Kevin Schaefer talks with fellow SMA News Today contributor DeAnn Runge. They discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s treatment, and an upcoming career webinar series from Cure SMA. Kevin and DeAnn also discuss mental and emotional health amid the pandemic, as well as access to the COVID-19 vaccine. Finally, they highlight some recent columns from our main website. ================================ Links to news stories: -https://smanewstoday.com/news-posts/2021/01/06/higher-dose-spinraza-trial-now-enrolling-part-b-after-no-safety-issues-found-in-part-a/ -https://smanewstoday.com/news-posts/2021/01/18/scholar-rock-topaz-apitegromab-trial-top-line-data-due-june-2021/ -https://smanewstoday.com/news-posts/2021/01/29/cure-sma-career-webinars-series/ ================================ Links to columns: -https://smanewstoday.com/columns/2021/01/22/wandering-lines-journey-unknown/ -https://smanewstoday.com/columns/2021/01/14/soaring-with-hope-welcome-aboard/ -https://smanewstoday.com/columns/2021/02/01/journey-internalized-ableism-belonging/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA). Also, several topics are being hashed over on the forums. Among them include breaking in a new wheelchair, frustrations with bureaucratic red tape, reflecting on being homebound for the last year, finding a new PCP and of course the ever popular topic of Evrysdi. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA). Plus, staying social during a pandemic isn’t easy. Cure SMA has found a way for the SMA community to connect during these difficult times. DeAnn Runge shares her experience with one of the adult online socials hosted by Cure SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

For January ONLY, please use promo code TAKE20 at checkout to receive a 20% discount!  Thank you so much to Issam and the team at Catch Sitka Seafoods for their support of the QB DadCast! In episode 43, I am honored to be joined by Dak Jordan, a former college QB who played at Pacific Lutheran University.  What is amazing about this story is that Dak and I played against each other nearly 20+ years ago!  It was 1996 and Dak's Lutes prevailed against my Wildcats and beat us 44-41 in a wild shootout that will always be a fond memory for me.  Yes, Uncle Rico moment! Today, we hear a very vulnerable Dak Jordan share the family story of their son, Jackson's genetic disease - Spinal Muscular Atrophy.   As a parent, you never want to see your child in pain, and we hear how Dak is working hard to be the QB of his household in every sense of the word.  So much of Dak's strength comes from his wife, but also his time spent at PLU with the great Coach Frosty Westering.  Coach always taught life lessons and worked on the inner game.   I would encourage everyone to visit www.curesma.org to learn more about how you can support this disease to help families who are faced with this adversity.  Thank you again Dak for your vulnerability as I'm hopeful your story will inspire many fathers out there who are facing similar challenges.  #EMAL #AttawaTo connect with Dak you can find him Linked In - https://www.linkedin.com/in/dakjordan/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join. Also, Vlogger and Forums Moderator, DeAnn Runge shares an overview of recent SMA News Today columns. She finds each of them relatable to her life living with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular Atrophy community. Typically a taboo topic, sex and SMA isn’t discussed often. Forum members and columnists have stepped up to the plate to open the discussion on dating and relationships, helping break the stigma that those with disabilities aren’t sexual beings. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Marisa joins us to give an update on her daughter Natalia who was diagnosed with SMA Type 1 at 6 weeks old. Marisa and her family and friends have raised over $175,000 for Cure SMA over the last 4 years and this year is fundraising to support SMA research at Mass General Hospital. This research is in need of $1,000,000 of funding for research. If you would like to donate directly you can do that here https://because.massgeneral.org/fundraiser/2607974. We are giving 100% of 100 shirts purchased up to 12/7/2020 to support this effort and auctioning off a Shovel Town Flag original wavy flag with 100% being donated as well. Will post auction link when live. Support this show http://supporter.acast.com/be-au-sm-episode-1. See acast.com/privacy for privacy and opt-out information.

Spinal Muscular Atrophy, or SMA, is a degenerative neuromuscular disease, and it's the number one genetic cause of death for infants. When Andy Butler was born in 2009, his parents Audra and Alan had never heard of SMA, so his terminal diagnosis was blindsiding. At that time, there were no treatment options for Andy, and he died from complications caused by the disease when he was just five months old. Audra, who also is part of the Sarina Fazan Media team, joins Sarina on this special podcast to tell Andy's story and to discuss how you can continue his fight as part of Andy's Army. Join Sarina and be part of Team Andy's Army at the Cure SMA 2020 November Virtual Walk-N-Roll by registering at www.Events.CureSMA.org/goto/AndysArmy2020.  For more discussions like this one, make sure to subscribe to the podcast “On The Record With Sarina Fazan."  Sarina Fazan's wardrobe provided by Triage Consignment Boutique (www.facebook.com/triageconsignment).  Sarina Fazan's dry cleaning and laundry provided by ZIPS Dry Cleaners (www.321zips.com/tampa).  Marc Marino, a financial advisor with Edward Jones, sponsors the “Let's Spread Kindness” initiative and the “On The Record With Sarina Fazan” podcast. To learn more about Marc Marino, visit his website at www.EdwardJones.com/financial-advisor/index.html?CIRN=J8Xt82uMZ5PTkAAfJx0rPPELPdflNeOixbnYxMnYXdXnKX7BL7zz5t8tIJl5Do72.  Find out how you can help spread kindness at www.LetsSpreadKindness.com, and follow the “Let's Spread Kindness” initiative on Facebook and Instagram @startspreadingkindness. #SarinaFazanMedia #SFM #TampaNews #ShareYourStory #Community #News #TampaBay #Tampa #Florida #AudraButler #CureSMA #SMA #WalkNRoll #SpinalMuscularAtrophy

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

A Look at Emerging SMA Outcomes: Highlights of CureSMA 2020

In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com

Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy. With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on the forums. In other discussions efforts to be inclusive regarding diversity in the SMA community have been brought up. Michael Morale’s latest video regarding tips on wheelchair selection has been released as well. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

A victory for patients in Oklahoma as the state bans a discriminatory healthcare metric. Quality-adjusted-life-years (QALYs) are used by numerous insurance companies to block coverage based on disability or age. Two mothers of children with spinal muscular atrophy (SMA) explain how QALYs impact their children’s access to affordable healthcare.  Guest:  Amanda Chaffin Amanda Chaffin is the mother of Kayden, a seven-year-old with spinal muscular atrophy (SMA). Amanda and her family reside in Norman, Oklahoma, where a ban on quality-adjusted-life-years was recently enacted.  Following Kayden’s diagnosis, Amanda faced immense challenges in securing the medical equipment he needed, which propelled her into the patient advocacy space. She works with Cure SMA, an organization that drives funding for SMA research and provides support for families affected by the genetic disease.  Kayden Chaffin made news headlines over the thousands of Christmas cards that strangers sent to him over the holidays.  Hosts: Terry Wilcox, Executive Director, Patients Rising Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest. Kate Pecora, Field Correspondent  Links: Oklahoma QALY Ban Patients Anticipate Future Access to Care Troubles from COVID-19 Kayden’s Christmas Cards Cure SMA Patients Rising Concierge  Need help? The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent? Drop us a line: podcast@patientsrising.org The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.

Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection. DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza during the coronavirus is available for listening. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

Go to our forums: http://bit.ly/forumsflashbriefings Forums Director Kevin Schaefer recounts the story of his adventures in Philadelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make going to the bathroom easier were talked about. Other topics included taking advantage of opportunities, the 2020 Cure SMA conference and the International Day of Acceptance.

On this week's episode, Matt and Aaron are joined by Tara Hahn, vocalist for Half Past Two. Tara shares her story of joining Half Past Two, the early years of the band and why Tara left but eventually returned. Tara also tells us about writing a new song about her daughter and why she is nervous about sharing it with the world. Lastly, we share with you our song picks on the week. Be sure to visit Half Past Two's website (https://www.halfpasttwoska.com/music) to buy the new song, all proceeds go to Cure SMA. Learn more at www.curesma.org Half Past Two: www.halfpasttwoska.com On The Upbeat: www.instagram.com/ontheupbeatska www.facebook.com/ontheupbeatska Spotify playlist: https://open.spotify.com/user/1df7h1zdml10rexobhg1og4nw?si=OARf-Ox1SOi6rPeXaSd98A

"Verse of the day" Psalms 91:2 (NLT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Psalms 91 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=psalms+91&version=NLT https://www.biblegateway.com/passage/?search=psalms+91&version=NKJV Definitions: Refuge: noun a condition of being safe or sheltered from pursuit, danger, or trouble. Safety: oun 1. the condition of being protected from or unlikely to cause danger, risk, or injury. Fortress: noun a military stronghold, especially a strongly fortified town fit for a large garrison. a person or thing not susceptible to outside influence or disturbance. Declare: verb 1. say something in a solemn and emphatic manner. Trust: noun 1. firm belief in the reliability, truth, ability, or strength of someone or something.

"Verse of the day" Psalms 91:2 (NLT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Psalms 91 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=psalms+91&version=NLT https://www.biblegateway.com/passage/?search=psalms+91&version=NKJV Definitions: Refuge: noun a condition of being safe or sheltered from pursuit, danger, or trouble. Safety: oun 1. the condition of being protected from or unlikely to cause danger, risk, or injury. Fortress: noun a military stronghold, especially a strongly fortified town fit for a large garrison. a person or thing not susceptible to outside influence or disturbance. Declare: verb 1. say something in a solemn and emphatic manner. Trust: noun 1. firm belief in the reliability, truth, ability, or strength of someone or something.

"Verse of the day" Revelation 21:4 (NLT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Revelation 21 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=Revelation+21&version=NLT Additional Reference: https://biblehub.com/commentaries/revelation/21-4.htm

"Verse of the day" Revelation 21:4 (NLT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Revelation 21 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=Revelation+21&version=NLT Additional Reference: https://biblehub.com/commentaries/revelation/21-4.htm

"Verse of the day" Philippians 4:19 (ASV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Philippians 4 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=philippians+4&version=NIV Additional Reference: bibleref.com/Philippians/4/Philippians-chapter-4.html

"Verse of the day" Philippians 4:19 (ASV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Philippians 4 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=philippians+4&version=NIV Additional Reference: bibleref.com/Philippians/4/Philippians-chapter-4.html

"Verse of the day" John 10:10 (NIV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is John 10 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=John+10&version=NIV https://www.biblegateway.com/passage/?search=John+10&version=NKJV Additional Reference: https://www.biblestudytools.com/commentaries/matthew-henry-complete/john/10.html

"Verse of the day" John 10:10 (NIV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is John 10 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=John+10&version=NIV https://www.biblegateway.com/passage/?search=John+10&version=NKJV Additional Reference: https://www.biblestudytools.com/commentaries/matthew-henry-complete/john/10.html

"Verse of the day" Psalms 121:1 (ESV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Psalms 121 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=psalms+121&version=ESV https://www.biblegateway.com/passage/?search=psalms+121&version=NKJV Additional Reference: https://www.biblestudytools.com/commentaries/matthew-henry-complete/psalms/121.html

"Verse of the day" Psalms 121:1 (ESV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Psalms 121 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=psalms+121&version=ESV https://www.biblegateway.com/passage/?search=psalms+121&version=NKJV Additional Reference: https://www.biblestudytools.com/commentaries/matthew-henry-complete/psalms/121.html

"Verse of the day" Proverbs 18:24 (GNT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Proverbs 18 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=PROVERBS+18&version=GNT https://www.biblegateway.com/passage/?search=PROVERBS+18&version=NKJV

"Verse of the day" Proverbs 18:24 (GNT) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Proverbs 18 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Matthew 6:9-13 "The Lords Prayer" Biblegateway Scripture References: https://www.biblegateway.com/passage/?search=PROVERBS+18&version=GNT https://www.biblegateway.com/passage/?search=PROVERBS+18&version=NKJV

"Verse of the day" Matthew 28:19 (NIV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Matthew 28 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Biblegateway Scripture: https://www.biblegateway.com/passage/?search=matthew+28&version=NIV

"Verse of the day" Matthew 28:19 (NIV) www.bible.com www.biblegateway.com Homework is always the book and the chapter for the day so today it is Matthew 28 Please donate to the Give Kids the World Village https://gktw.org/ and to CureSMA https://www.curesma.org/ Click on the link or copy and paste the link address for everything wandasncredible (apparel, household and books) including FREEBIES (free items including bibles) linktr.ee/wandasncredible Send prayer requests and testimonies to the ministry email at wandasncredible@gmail.com To be a blessing to the ministry in anyway see the support button on the front page of the podcast (Marked as the Tip Jar) If you want to purchase an affordable bible in a version of your choosing? Click this link https://amzn.to/2P7fAaC Salvation Reference: Romans 10:9-10 King James Version (KJV) 9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. 10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. James 5:16 King James Version (KJV) 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Biblegateway Scripture: https://www.biblegateway.com/passage/?search=matthew+28&version=NIV

Sook Yee"My son started painting when he's 2 years old, and we use that as a therapy." --Sook Yee.Sook Yee is a Malaysian mom whose son has SMA. Doctors believed her son had only one year to live. Now that her son just celebrated his ninth birthday, Sook Yee finds a way to empower people in her SMA advocacy.Sook Yee explains how she inspires parents in Malaysia with children with SMA.Here are the highlights of her interview:Practising the best standard of care is vital to every child’s journey with SMAMotivating her son to enjoy his past time, such as painting, and made that a symbol to inspire othersRaising funds from his son’s paintings with the help from Unicef and Petronas in MalaysiaTaking advantage of radio and newspaper to spread information on the best standard of care for SMAContinued search on websites and countries containing information dealing with SMAGiving importance on attending SMA conferences to connect to people with the same experienceSook Yee’s son has no Facebook page yet but they were able to set up a Facebook group called “Brandon Growing Up with Spinal Muscular Atrophy”.Discover more in this podcast how Sook Yee is inspired her by her son’s happy disposition to continue her amazing advocacy of SMA. Sook Yee can’t wait to share valuable information on SMA management in May next year for SMA Australia conference.Cure SMA - http://www.curesma.org/Call us (03) 9796 5744Email us at reception@smaaustralia.org.auVisit our website at http://www.smaaustralia.org.auFacebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

On this Dad to Dad podcast host David Hirsch talks to Shane Lee, a systems administrator and a father of five, including Jocelyn, who sadly passed away at age 4 ½ from complications related to Spinal Muscular Atrophy. We'll hear the amazing story of the Lee family and their travails and triumphs over SMA on this Dad to Dad Podcast, presented by the Special Fathers Network. To find out more about the Special Fathers network, go to 21stcenturydads.org.

Al Freedman“We’re lucky to have our kids to however long we have them, and that’s how I feel about my son… think about what our kids can do.” - Dr. Al FreedmanHaving a support system from friends and families for our people who are diagnosed with SMA is the most wonderful way we can build a better community for them.We are joined by Dr. Al Freedman who is a psychologist by profession and a loving father to his son, Jack, who has SMA.Listen in to our discussion about the following topics:Dr. Freedman’s inspiring story about his son, Jack (0:54/ 3:41)What advice we can share to families with children diagnosed with SMA (1:30)Global SMA conference by Cure SMA (3:30)The SMA Community and Support Groups (5:02)Upcoming SMA conference with Dr. Freedman in Australia (5:49)Peer-to-peer discussions between kids with SMA (6:55)Stigma around SMA (Spinal Muscular Atrophy) (8:08)Parenting advice from Dr. Freedman (8:56)And there are more discussions at the end of this episode!Know more about Dr. Al Freedman at http://www.drfreedman.com/Cure SMA - http://www.curesma.org/Call us (03) 9796 5744Email us at reception@smaaustralia.org.auVisit our website at http://www.smaaustralia.org.auFacebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma can help babies treated early, but older patients may also benefit. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he shares some of the highlights from the 2019 Cure SMA Conference. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reldesemtiv. Also, Kevin and columnist Brianna Albers share their experiences at the 2019 Cure SMA conference. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a rare case of severe SMA in India, that was partly evident by bone fractures at birth. Also, Community Development Manager Kevin Schaefer talks about his experiences at the 2019 Cure SMA conference. Cure SMA is the largest SMA nonprofit organization, and this year’s conference took place in Anaheim, California. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

We discuss how Cure SMA and PPMD join Prometheus Research in a data collection partnership. Also, Community Development Manager Kevin Schaefer shares tips for parents about finding the right aid for their child with SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

Anna Landre is a Georgetown University sophomore who has a rare disease, spinal muscular atrophy (SMA) and is a wheelchair user.  In addition to being a full time student, Anna serves as Commissioner of the Advisory Neighborhood Commission where she advocates for people with disabilities and to improve accessibility on the Georgetown campus and in the district.  She talks about educating elected officials about possible ways to overcome challenges for those in wheelchairs and raising awareness about those living with rare diseases. #onestepaway  #SMA  #cureSMA  

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the Cure SMA campaign promotes early diagnosis and treatment. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks about the impact of technology in his everyday life. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

Dr. Baron Grutter is a the Co-owner of the Blue Sky Bio Academy and course director for the Blue Sky Bio Digital Orthodontics course. Dr. Grutter is also a 3D printing expert who has printed everything from ortho aligners to special reading glasses for his daughter. Not only is he a talented Dentist with a knack for 3D Printing, he is also a strong advocate for Spinal Muscular Atrophy (SMA) research and a huge supporter for SMA awareness. Listen as Dr. Grutter talks to Glenn and Vinh about topics ranging from money saving tips using 3D printers to his love for Double Chicken Chopped salads from Subway. Notes of Interest: *Dr. Baron Grutter is the owner and practicing Dentist at Happy Rock Dental *Dr. Grutter teaches courses ranging from surgical implant planning to Digital Ortho for Blue Sky Bio *He is the owner of two 3D printing machines – Form2 and Moonray 3D Printers *Dr. Baron Grutter's daughter Nella was born with Spinal Muscular Atrophy (SMA) *SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. *Dr. Grutter is very active in the SMA community and a big supporter of Cure SMA organization *He has created a special Facebook page (Prayers for Nella) for those who want to follow Nella's progress *Dr. Baron Grutter will be teaching Digital Ortho in upcoming courses in LA and Chicago *Use promo code “NiftyThrifty” to get $200 off the Digital Ortho Course *Fake Arnold Schwarzenegger makes an appearance Links from the show: Happy Rock Dental – https://www.happyrockdental.com/ Dr. Baron Grutter Course Page – https://www.barongrutterdds.com/ Blue Sky Bio Academy – http://www.blueskybio.academy/public/main.cfm Prayer for Nella FB Page – https://www.facebook.com/PrayersforNella/ Cure SMA – http://www.curesma.org/ GWENDOLYN STRONG FOUNDATION – https://thegsf.org/ The Nifty Thrifty Dentist CE Event – http://niftybackup.getpracticegrowth.com/ce-event/ Legwork PRM – https://www.legworkprm.com/ Keating Dental Arts – https://keatingdentalarts.com/ Wallace Specialty Insurance – http://www.insurance4dds.com/ Online Dental Consulting – https://onlinedentalconsulting.com/ Acknowledgements “Sandstorm” is property of Darude No copyright infringement intended

Two Fit Crazies and a Microphone Podcast Episode 48 -Wayne Cornett “I’ll Run For Kirsten Until She Can!” Father of 3 Runs for his daughter Kirsten Team SMA (Spinal Muscular Atrophy) In Episode 48, the two fit crazies had the honor of speaking with a beautiful soul by the name of Mr. Wayne Cornett. His story WILL restore your faith in humanity. This father of 3 talks candidly about how his daughter’s SMA, Spinal Muscular Atrophy, diagnosis, a disease that causes death for most infants before the age of two, changed his life forever. Fit Crazy Christine recounts her first meeting with Wayne at the New Jersey marathon, to his new mission to raise enough money for a racing push chair so that Kirsten can “race with her daddy.” This interview is both touching and inspiring. Let’s help Wayne race with his daughter! And let’s remember that running is about so much more! GO FUND ME “Kirsten’s Race! SMA Push Chair” is waiting for YOU! Go Fund Me: Kirsten’s Race! SMA Push Chair! ($5,000 Goal: Purchases the push chair) Learn more about SMA at www.CureSMA.org -Two Fit Crazies

Update on Reldesemtiv and further reactions to the CureSMA 2018 Conference from SMA News Today Community Editor, Kevin Schaefer.

New insights into how adolescence affects walking in type 3 SMA patients, and SMA News today Community Editor Kevin Schaefer talks about his experiences at CureSMA's annual meeting in Nashville.

#10 - Friederike And Anna Wittchen From #CureSMA 2018 by SMA News Today

Nearly a year ago, more than 400 members of spinal muscular atrophy community along with industry, clinicians, and researchers convened a patient-focused drug development meeting with the U.S. Food and Drug Administration to give voice to patient views on the impact the rare condition has on their lives and their priorities for treatments. CureSMA, which organized the event, recently issued its Voice of the Patient report based on the meeting. We spoke to Rosángel Cruz, associate research director of clinical affairs for CureSMA about the report, how it is being used, and what other patient groups could learn from CureSMA’s experience.

Listen to the latest news on CureSMA funding for 2018.

World Rare Disease Day, an annual international effort to create awareness for rare diseases, will take place February 28. This year, the theme is on how research brings hope to people living with rare diseases. This seemed like an opportune time to talk to Kenneth Hobby, president of CureSMA, about his organization’s efforts to drive research for spinal muscular atrophy, the most common genetic cause of death for infants. We spoke to Hobby about CureSMA’s strategy for research, the role the group played in helping to make possible the first approved therapy for the disease at the end of last year, and what other rare disease organizations can learn from its experience.

This episode features Durrie vision CEO/Author/Entrepreneur Harry Campbell discussing his wife's bout with a brain tumor and how proceeds from his books and speaking engagements have raised more than $200,000 for Head For The Cure; then, Chris Johnson discusses his family's experience with Spinal Muscular Atrophy. Johnson's daughter was diagnosed at a young age, and now the Walk and Roll 5k raises money for SMA research. Finally, Tori Fugate from KC Pet Project discusses their back to school pet adoption event and raising money to offset vet costs for homeless pets.