Podcasts about cf foundation

Cystic Fibrosis and obesity?  Until recently this has not been a topic of conversation for the CF community. The reason for obesity in the CF community is better health and longer lives, so the concern is now a reality.  University of Michigan CF doctor, Carey Lumeng is researching the issue.  As he says in this podcast, researchers have a lot to learn about the connection between better health in CF and obesity.  We also talk about The Bonnell Foundation fellowship program. A few years ago we started the program to encourage doctors to work in the specialty field of cystic fibrosis. Dr. Lumeng is one of the doctors who oversees this program.Dr. Lumeng is the Frederick G.L. Huetwell Professor for the Cure and Prevention of Birth Defects and Professor in Pediatrics and Molecular and Integrative Physiology. Dr. Lumeng is the Division Chief of Pediatric Pulmonology at the C.S. Mott Children's Hospital and Associate Director of the Michigan MSTP Program.He grew up in Indiana and graduated from Princeton University in Molecular Biology. He received his PhD in Human Genetics and MD from the University of Michigan and completed residency training in Pediatrics in the Boston Combined Pediatrics Residency Program at Boston Children's Hospital and Boston Medical Center. He then completed fellowship training in Pediatric Pulmonology at the University of Michigan and started as faculty in 2006.  He runs a research lab focused on the health effects of obesity and the links between metabolism and lung health. The laboratory participates in both basic science and translational research projects in adult and pediatric obesity. He is funded by the NIH and the CF Foundation for new projects studying the changing causes of diabetes in people with CF.To contact the CF pediatric department (the Bonnell girls are pictured on this page): https://www.mottchildren.org/conditions-treatments/cystic-fibrosis-pediatric?pk_vid=6ff46bd2d38fe04c1739891353f5b28b Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Jacqueline Capriotti is a small business owner, passionate advocate, and co-founder of Health Revolution USA, a health-focused consulting firm specializing in PR, political and marketing strategies, campaign consulting, event production, and coalition building. The firm provides strategic solutions for organizations, policymakers, and movements dedicated to transforming public health, advancing wellness initiatives, and driving systemic change. With a diverse background spanning public relations, grassroots coalition building, and policy development, she has been at the forefront of initiatives that challenge the status quo and push for meaningful health reform.Jacqueline's advocacy journey began as a caregiver for her two children, both diagnosed with cystic fibrosis plus multiple related and unrelated co-morbidities. Her son's battle with chronic pancreatitis, which left him unable to eat by mouth for two years and frequently hospitalized, inspired her to co-found the Foundation for Childhood Pancreatitis. She also served as a board member for the Cystic Fibrosis Foundation - Greater NJ Chapter, where she played a key role in helping the CF Foundation launch the CF Caregiver Support Initiative in New Jersey.Jacqueline is the founder of the Victory Garden Alliance, a movement dedicated to food sustainability, revival of patriotism, regenerative farming, and self-sufficient communities. She believes that the intersection of nutrition, environmental health, community collaboration and medical advancements is key to reversing the chronic illness epidemic.On a national level, Jacqueline played a pivotal role in Robert F. Kennedy Jr.'s Presidential campaign, leading community outreach efforts for the chronic illness population and running successful grassroots initiatives. She coordinated the Kennedy Victory Garden Project, and elevated Farmers for Kennedy, amplifying health and sustainability policies within political platforms.Through her leadership at Health Revolution USA, Jacqueline continues to champion policy reforms, public health initiatives, and strategic collaborations that support initiatives enhancing food quality, medical and technological advances in health, strengthening relationships between the public and medical providers, and promoting regenerative agriculture and organic practices to improve quality of life and end the chronic illness epidemic in America. Whether through legislation, grassroots activism, or public awareness campaigns, she remains committed to Making America Healthy Again.Jacqueline CapriottiFounder, Health Revolution USA | Victory Garden AllianceWebsiteEmail: Jacqueline.c@healthrevolutionusa.orgAbout Rev. WendyRev. Wendy Silvers is on a mission to help soul-centered, high-aspiring moms activate their fullest potential, raise empowered, healthy children, and leave a legacy that transcends generations. As a Minister, Intuitive, and Transformational Life Coach, Rev. Wendy guides successful and soulful women toward alignment and fulfillment in their personal and professional lives. She provides guidance and clarity when they feel stagnant, unfulfilled, or unclear on their next steps. Rev. Wendy helps them end sabotage and honor their intuition so they stand in their spiritual power and change their world from the inside out!Follow Rev WendyIg: https://instagram.com/revwendysilvers X: https://x.com/wendysilversFb: https://facebook.com /mamawendysilversTikTok: https://tiktok.comm/wendysilvers

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda's health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives.   Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation.When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives. In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism.  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo  We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.    In this heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki's journey navigating her daughter Taylor's diagnosis from day one, the emotional rollercoaster of becoming a medical parent, her advocacy for Taylor's care, and the importance of equity in newborn screenings for CF. With Taylor's unique case, Nikki discusses the challenges and triumphs of managing a life-changing diagnosis, emphasizing the role of medical teams and community support in fostering resilience and hope.   Key Insights: The Importance of Early Diagnosis: Nikki emphasizes how critical early diagnosis was for her daughter Taylor, who started life-saving medication within months of her birth. Advocacy and Education: Nikki shares how she became an expert in her daughter's care, highlighting the necessity of parents being active members of the care team. Equity in Healthcare: Nikki passionately discusses the disparities in newborn screenings for children of color and the need for equity in medical care to prevent delayed diagnoses. The Power of Community: Finding other parents online and connecting with the Cystic Fibrosis Foundation were vital for Nikki in navigating the challenges of CF.   "Finding other parents online who are going through the same thing has been a lifeline for me." – Nikki DeLeo   Resources & Tips: Cystic Fibrosis Foundation: Visit the CF Foundation to find local chapters and resources for parents and caregivers. Book Recommendation: Breath from Salt - An insightful book about the CF community and the advancements in CF care. Follow Nikki's Journey: Check out Nikki's Instagram page, @salt_for_sweet_t, for more on her family's journey.   When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan  

Welcome to summer! The MCPA has a full slate of outdoor events in the coming months, and it won't be long before they will be announcing the next season of top-notch entertainment at the Marathon Center for the Performing Arts (at 13:14) --- What's Happening: Spend some family time in the great outdoors this summer with upcoming programs and activities with the Hancock Park District (at 23:18) --- To Your Health: May is Cystic Fibrosis Awareness Month... and although there's no cure, new treatments are allowing those with the disease to accomplish more than ever before - case in point, the board chair of the CF Foundation, KC White of Chagrin Falls, who is the first person with the disease to hold that title (at 44:48)

Aliyah Novelli was diagnosed with cystic fibrosis as an infant.  Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA.   Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it started. Aliyah launched her mindfulness program this year. It's for a program for adults 18 to 35 years old on CF modulators.Aliyah earned her master's degree in social work at the University of Pennsylvania. She also got a bachelor's degree in Fine Arts in dance at Temple University.Aliyah lives with her husband Mark and Mr. Boots (her polydactyl cat). They also have a Cavapoo dog named, Sammy. Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Who will want to take on a person with CF?  That is the question many women born with the disease think about after high school.Megan Bauer thought about it a lot. Until she met Alec.  At 26 years old  the University of Michigan graduate is happily in love. But until she found her prince, she found a lot of men who couldn't handle dating a person with CF.Megan met Alec when she was 19 years old at the University of Michigan, and they have been together for 7 years. They are planning their June 2024 wedding. Megan works as a Customer Experience Associate at LinkedIn, and stays active in the CF community helping the Bonnell Foundation and the CF Foundation.  The Bonnell Foundation is grateful to Megan for her volunteering commitment to us, since 2019.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en 

In January, The American Thoracic Society (ATS) held a webinar about the challenges facing CF families in low-income countries.  Drs. Samya Nasr and Grace Paul were key participants in the webinar. Two doctors who have been featured on this podcast. This is where I first saw I Dr. Hector Gutierrez.Dr. Gutierrez is the Raymond K. Lyrene Chair, Professor, and Director of the Division of Pediatric Pulmonary and Sleep Medicine at the University of Alabama at Birmingham (UAB). Dr. Gutierrez is native to Chile, where he did medical school and pediatric residency. He did his subspecialty training at Peds Pulmonology UAB and has been at the CF Center since 2003. Dr. Gutierrez has developed a robust training program for CF teams from resource-limited regions outside the US. He is currently the Co-chair of the CF Foundation's Global Advisory Committee.  We're honored to have him join us today.  He has so much knowledge of CF life around world, and we're grateful that he shared his knowledge with us.Thanks to Beth Vanstone for producing this podcast.The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

19 year old Atef Choudhury and 18 year old Naim Mashni are both sophomores at MSU, and they have found their voice.  Atef has a nephew with CF and that is what made him want to start to raise awareness on campus.  And so Cure Found MSU was born.  In their young lives this two men have accolades to long to list here, just know they are smart and motivated to change the world.  They work closely with the CF Clinic at MSU run by Dr. Ryan Thomas.  Part of what they do is to offer their 70 members top tier opportunities in the field. So along with resume building, they also fundraise.  In 2023 they will be doing some fundraising for The Bonnell Foundation and the CF Foundation.  You'll be inspired to do more yourself after you hear everything Atef and Naim are up to.  Our hats off to them for their enthusiasm, sense of community and for all the ways I know they're going to change the world for the better.The Bonnell Foundation: https://thebonnellfoundation.orgEmail us: thebonnellfoundation@gmail.comCureFound MSU: https://curefoundmsu.orgThanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.com/Viatris:  https://www.viatris.com/en

Johnny and BW preview the 2022 Masters Tournament.  Johnny talks about his visit to August in 2008 with his good buddy Tom Sikes. Be sure to support our mission of raising funds for the CF Foundation at JohnnyPacker.com, get some fresh coffee or swag while supporting a good cause.  Support the show (https://www.patreon.com/Johnnypacker1181)

Rick Cleveland of mississippitoday.org  and the Crooked Letter Sports Podcast joins the show.  He tells us about some of his favorite moments covering sports in Mississippi for the Clarion Ledger and Mississippi Today.  We also discuss how he ended up as the director of the MS Sports Hall of Fame and who he thinks belongs on the MS Sports Mt. Rushmore.Help support our cause of raising funds and awareness for the CF Foundation by purchasing a bag of freshly roasted coffee at JohnnyPacker.com.Support the show (https://www.patreon.com/Johnnypacker1181)

Bijal Trivedi is a journalist and an author. She spent 8 years writing the book, Breath from Salt.  It's an in-depth look at how parents with CF children banded together to start what is now the Cystic Fibrosis Foundation. Trivedi weaves a beautiful story of all the players, from CFF President Bob Beall, to Joe and Kathy O'Donnell's involvement and all the other parents intertwined along the way.  The scientists contributions are worked into the book beautifully.  You'll learn things about CF you may have never heard before, and you'll be cheering on those scientists. Trivedi recently became Senior Science Editor at National Geographic.   When Trivedi began Breath of Salt in 2012 she was familiar with a drug that would only help 4 percent of the CF population, she realized how quickly science was moving in the field of CF, and decided to write about the history of CF, and all who had a role in getting us to where we are today (2022).  No one in Trivedi's family has CF, but we certainly consider her family.  Her book teaches us not only about the beginning of the CF Foundation, but also about the parents who built it.  Our stories (Laura Bonnell and Beth Vanstone) are very similar in many respects. This podcast features Laura Bonnell and Beth Vanstone (two CF mom's). Vanstone lives in Canada where she has worked tirelessly to make CF drugs more accessible not only to her daughter Madi, but to other CF families.  She is a huge advocate and friend of The Bonnell Foundation.Links:Bijal's book: Breath from Salt: https://www.amazon.com/Breath-Salt-Patients-Families-Medicine/dp/1948836378For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/ 

In episode 3, Andy and Jeffrey dug into Andy's fight to conquer Cystic Fibrosis, books he's written, love of sports, running with the Olympic torch, and more... Follow Andy and The CF Warrior Project on Twitter: @CFWarriorProj; Instagram: @CFWarriorProject;TikTok: @cf_warrior_project ; and Facebook: Andy-Lipman. Check out Andy's website at cfwarriorproject.org. Andy Lipman has cystic fibrosis, but cystic fibrosis will never have him. On his 38th birthday, Andy passed the current median life expectancy for people with cystic fibrosis (CF). At 48, his life expectancy now exceeds the expected. Andy is a positive role model who defied all odds to become a college graduate, Olympic-torch bearer, runner, advocate, author, husband, and father. He is dedicated to finding a cure for this genetic disease. Andy's fourth book, The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis, celebrates the people from around the globe who, like him, persevere and live life the fullest every day even though they have a terminal, invisible disease. The book is available on Amazon and other booksellers. Andy is currently working on a second installment of The CF Warrior Project. The CF Warrior Project is more than a book, it is a movement. Andy, in fact, appeared on The Today Show to discuss his story along with the movement. Andy has two written memoirs telling his story battling the long odds of a CF diagnosis: Alive at 25: How I'm Beating Cystic Fibrosis and The Drive at 35: The Long Road to Beating Cystic Fibrosis. In addition, he wrote A Superhero Needs No Cape about a young person who grows up wanting to play Major League Baseball, but he must do so while fighting cystic fibrosis. Not just relating stories of survivors, Andy is also dedicated to finding a cure for this terminal disease. He founded the Wish for Wendy Foundation in memory of his older sister, who died from CF after only 16 days of life. In 2017, Andy was the recipient of the Alex Award presented by the Cystic Fibrosis Foundation. As of 2021, Wish for Wendy has contributed more than $4.5 million to help raise awareness for cystic fibrosis and fund research for a cure. Andy has spoken all over the US and in Ireland. Andy adheres to a rigorous daily workout routine. His fitness accomplishments include: running the 10-km Peachtree Road Race every year since 1997, finishing a triathlon, and completing the difficult 90-day workout program P90X. In 2006 Andy became a father, a miracle for any male with cystic fibrosis because they are nearly all infertile. The Lipmans' second child, also conceived with the help of IVF, was born in 2008. Andy holds a degree from the University of Georgia and serves on the Terry College of Business emeritus board. He also has served on the GA Chapter of the CF Foundation board (the first ever CF patient to do so) and was the corporate sponsorship chair for three years at the National CF Foundation. Andy currently lives in Atlanta, Georgia, with his wife Andrea and their two children. He began a breakthrough cystic fibrosis drug called Trikafta in November of 2019 and has since seen his lung function skyrocket to levels he has not seen in more than 25 years.

Steve Ballou has been running the Cystic Fibrosis Walleye Classic for 20 years. It started when he ran Break On The Lake Resort and has continued even after he sold the resort. The Ballou's had two children who had CF: Their son who died at age 17, and their 34 year old daughter, a living testament of the progress that has been made in the battle against CF. We discuss CF, the CF Foundation, tourney details and fall fishing on Cass Lake.

CLIMBING A VOLCANO IN AFRICAIn this episode, Dan welcomes Nat Gallen onto the podcast. Nat Gallen is a long-time friend and a true inspiration to many. This podcast is a detailed description of climbing the highest summit in Africa. Nat gives an honest overview of his battle with cystic fibrosis and overcoming all obstacles to achieve this amazing accomplishment. Cystic Fibrosis (CF) is a genetic disorder that primarily affects the lungs and the digestive system. Nat shares his experiences and displays an extreme amount of gratitude for his situation. He spoke at the CF Foundation following the completion of his climb, which continued to bring awareness to this disorder. Nat's Article on the Climb: http://www2.readingeagle.com/article.aspx?id=505446Thank you for joining us, we hope you learned something new. We are excited to bring you the latest information with honest dialog. As always, we are starting the conversation... we hope you continue it!

Marc Ginsky is the Cystic Foundation Chief Operating Officer. After many conversations with Nick, Marc was able to make it on the show. On this podcast we talk about the amazing research the CF Foundation is doing, the community the foundation has created, the lives its saving, and just the amazing lessons learned from working with such an amazing organization. CFF.org@CF_FoundationFoundation Links:About CF – Learn more about cystic fibrosis, a genetic disease that affects the lungs, pancreas, and other organs. Our Mission – The CF Foundation will not stop until CF stands for Cure Found.Path to a Cure – The most important work in CF is still ahead. Learn more about the research we are funding to reach treatments for all and eventually a cure for cystic fibrosis. Get Involved – There are so many ways that you can get involved with the Cystic Fibrosis Foundation. Attend an event, donate your time, or donate to the cause so we reach a cure for cystic fibrosis. Find Your Chapter – Find your local CF Foundation chapter and learn how you can get involved in your community. Tomorrow’s Leaders – Join Tomorrow’s Leaders, the CF Foundation's young professionals group that provides opportunities to connect with others, learn and grow personally and professionally, all while making a difference in the lives of those living with CF. Advocate  – Volunteer advocates drive our legislative and regulatory agenda forward at every level of government. Together, we are improving access to high-quality, specialized care so people with CF can live longer, healthier lives. Support the show (http://SupportPodcast.ChooseYourAttitude.com)

    Adrian Bordelon & Megan Reynolds from Beard Mobb Louisiana are putting on an online competition this weekend benefiting the CF Foundation. The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses. Cystic fibrosis is a genetic condition which causes digestive fluids, sweat, and mucus to become thick and sticky—blocking up airways, digestive passages, and other ducts throughout the body. Because of the blockages caused by CF, the disease is eventually fatal. Be sure to Cher this episode for a chance to win some great products from Honest Amish. Go to TalkingBeards.com for more info on the show and to subscribe to the podcast. Talking Beards website www.talkingbeards.com SUBSCRIBE to the Talking Beards with The Beardcaster podcast by going to- www.thebeardcaster.com/subscribe Talking Beards Store https://teespring.com/…/talking-beards-3 BS Buttons Beard Bulletin Board- let us know about something you want to promote https://www.facebook.com/groups/407082256748940/ BS Buttons on Facebook-order your buttons through this link- https://www.facebook.com/groups/872390072895713/ Talking Beards is LIVE on Facebook every Tuesday at 8pm est https://www.facebook.com/talkingbeards/ Talking Beards Facebook- https://www.facebook.com/talkingbeards Please check out our friends at Honest Amish and try one of the best selling beard brands available!!! Honest Amish- https://www.honestamish.com Also check out our friends at the Original Poop Knife! https://www.originalpoopknife.com/ Aaron D. Johnston- Aaron D Johnston- Facebook https://www.facebook.com/aaron.d.johnston1 Aaron D. Johnston-Instagram https://www.instagram.com/aarondjohnston Scott Sykora Scott Sykora- Facebook https://www.facebook.com/scottsykora Scott Sykora- Instagram https://www.instagram.com/scottsykora/ Check out our other great shows on Talking Beards-The Network www.talkingbeards.com/the-network Talking Beards is available of the KPNL Network-go check out other various “strange” shows- KPNL RADIO http://www.kpnl-db.com/ THE NEW HOME OF THE TALKING BEARDS NETWORK https://www.youtube.com/c/TalkingBeards/featured  

Researcher & Patient Collaboration to Humanize Care: Ella Basala“ People really do accept and like us for who we are. It has taken a long time to understand that. As a younger person dealing with a chronic illness, that was definitely an inhibitor for me to make these close relationships and to just to be myself.“– Ella BasalaAbout Ella: Ella Balasa is a patient advocate and a person living with cystic fibrosis. Diagnosed at 18 months old, cystic fibrosis (or “CF”) is a life-limiting, invisible, chronic, and rare lung disease. Before digging into Ella and her background, I want to shed some more light on what it means to have CF to give you all some context: Since early childhood, Ella has had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of the disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. Her disease is becoming visible as she requires using supplemental oxygen with physical activity. But despite having 28% lung function, she’s never let it be her excuse.With an academic background in biology, Ella is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about the value of patient voice in research as well as her experience with phage therapy (which we’ll talk about) as a previous speaker at the FDA, the Milken Institute's Future of Health Summit, and other conferences. She is deeply involved in the CF community through being a director of the US Adult CF Association, serving as a member of research committees for the CF Foundation, and through her passion for writing. Ella writes about her research experiences and introspectively about the hardships, yet triumph that comes with living with a chronic illness. Through these opportunities, she provides a scientific voice and hopes to encourage empowerment in patient communities. In her free time, Ella enjoys cooking, drawing, spending time with friends, and traveling when she can. To learn more about her work and experiences visit, www.ellabalasa.com. In this episode, Ella and Eva discuss:Patient Empowerment in the world of researchThe overlooked patient-researcher relationshipThe formation of research (and all) relationships through vulnerabilityLinks to Visit:Ella’s Website: www.ellabalasa.comTwitter: @ellabalasa1Instagram: @thisgirlellaTime Stamps:3:00 Ella’s Journey with CF5:42 The role of relationships In Ella’s Journey7:33 Ella’s personal journey to self acceptance8:58 The aspect of vulnerability in relationships10:20 Ella’s experience with connecting through vulnerability17:27 Is vulnerability in the doctor-patient relationship the same as in research?19:49 The disconnect of researcher vulnerability22:17 Ella’s experience with advocacy work26:28 Why is there a shortage of self advocacy in healthcare?36:57 How to take action in the researcher-patient relationship as a patient38:21 How to break the patient language vs. researcher language barriers48:33 How can patients better self advocate?53:00 What have you learned from your experience with CF? CLICK HERE FOR FULL TRANSCRIPT.PLEASE SUPPORT US BY: SHARING WITH LOVED ONES

Professor Amira Sims and Roxie Rubio talk about the Ijeoma Oluo's book So You Want to Talk About Race. In this series we make mistakes, talk about difficult topics in the wrong way, and try to understand each other better. ------------------------- College of Central Florida offers equal access and opportunity in employment, admissions and educational activities. The college will not discriminate on the basis of race, color, ethnicity, religion, gender, pregnancy, age, marital status, national origin, genetic information, sexual orientation, gender identity, veteran status or disability status in its employment practices or in the admission and treatment of students. Recognizing that sexual harassment constitutes discrimination on the basis of gender and violates this policy statement, the college will not tolerate such conduct. CF Speaks would like to thank the CF Foundation for their generous support for this program. We would also like to thank the Webber Gallery for housing our podcast studio. --- Send in a voice message: https://anchor.fm/cfspeaks/message

Dr. Mary Ann Begley and Rebekah McCoy talk about the Ijeoma Oluo's book So You Want to Talk About Race. In this series we make mistakes, talk about difficult topics in the wrong way, and try to understand each other better. ------------------------- College of Central Florida offers equal access and opportunity in employment, admissions and educational activities. The college will not discriminate on the basis of race, color, ethnicity, religion, gender, pregnancy, age, marital status, national origin, genetic information, sexual orientation, gender identity, veteran status or disability status in its employment practices or in the admission and treatment of students. Recognizing that sexual harassment constitutes discrimination on the basis of gender and violates this policy statement, the college will not tolerate such conduct. CF Speaks would like to thank the CF Foundation for their generous support for this program. We would also like to thank the Webber Gallery for housing our podcast studio. --- Send in a voice message: https://anchor.fm/cfspeaks/message

Foram vários e-mails para amigos, famílias e empresas, e principalmente, muitas postagens nas redes sociais. Em menos de quatro meses, a cientista Miriam Frankenthal Figueira levantou cerca de US$ 12 mil para a fundação americana de fibrose cística, a CF Foundation. Por seu esforço, a fundação selecionou essa carioca de 33 anos para o programa “Tomorrow 's Leaders” (Líderes do Amanhã). Miriam não esconde o orgulho de ganhar o prêmio. Frida Sterenberg, correspondente da RFI em Nova York “Ela é uma fundação essencial para o avanço da ciência. Um dos medicamentos mais novos que nós temos, que é uma mudança de paradigma na fibrose cística, foi primeiramente financiado pela CF Foundation", explica. "O conhecimento ajuda a desenvolver tratamentos não só para os Estados Unidos, mas pro mundo todo." Miriam ocupa um lugar especial nesse grupo de jovens líderes: o trabalho que ela desenvolve é em sua própria doença, diagnosticada aos 13 anos. Até então, seus sintomas eram tratados como se ela tivesse bronquite e asma. Mas aos 12 anos, magrinha e continuando a perder peso, ela sentia que tinha algo errado.  A fibrose cística é uma doença genética rara que afeta vários órgãos, principalmente o sistema respiratório. Por causa de uma proteína defeituosa, há um desequilíbrio de água e sais na superfície das células. Essa disparidade cria um muco espesso no pulmão, o que leva a um ambiente favorável a infecções constantes. Com o tempo, as contaminações repetidas danificam e destróem o tecido pulmonar. Doença despertou vocação para a pesquisa Ela conta que, após o diagnóstico, seus pais fizeram contatos com pesquisadores internacionais e relataram sobre os avanços nos estudos para desenvolver novos tratamentos. “Isso me despertou um interesse de querer fazer parte. Me deu esperança também de que novos medicamentos iriam surgir e aliviar os meus sintomas”, relembra.  Miriam estudou Biomedicina no Brasil e hoje faz pós-doutorado na Universidade da Carolina do Norte, onde pesquisa fisiologia pulmonar e, especificamente, a fibrose cística. “Ser cientista e entender mais sobre a própria doença me ajuda na adesão ao tratamento. Eu estou por dentro do que está acontecendo, eu sei o que está vindo por aí. Então isso me mantém motivada também.” Ainda não existe cura para essa doença que afeta cerca de 75 mil pessoas no mundo, mas os avanços científicos das últimas décadas acrescentaram muitos anos de vida aos pacientes de fibrose cística, além de uma grande melhora na sua qualidade de vida. Miriam explicou que existem mais de 2 mil mutações na fibrose cística. No Brasil, a grande diversidade étnica faz com que a maioria dos pacientes – assim como ela própria – tenha mutações raras. “Existem atualmente medicamentos, mas a maioria trata somente dos sintomas. Por exemplo, trata a infecção: consiste em várias nebulizações para tentar manter as infecções pulmonares controladas", observa. "Mas oito anos atrás, surgiu um primeiro medicamento que atua no defeito celular, que é um defeito dessa proteína. O problema é que esse primeiro medicamento foi só para 5% dos pacientes que tinham algumas mutações específicas.” No Brasil, esse medicamento foi aprovado para ser incluído no SUS apenas no ano passado – quase uma década de atraso, para o grupo de pacientes elegíveis a esse tratamento. RNA mensageiro promete novos avanços no tratamento Em 2019, um novo medicamento,Trikafta, foi aprovado para 90% dos pacientes nos Estados Unidos, os que têm a mutação mais comum. Miriam conta que, por ter mutações raras, ela não se beneficiaria do Trikafta. A cientista achou que demoraria muito para ter acesso a um tratamento como esse, que atua direto no defeito celular. Mas em 2020, testes in vitro demonstraram que uma das mutações de Miriam responde bem ao Trikafta. Ela começou o novo tratamento em janeiro e diz que sua vida se transformou. “É realmente impressionante. Quando você tem fibrose cística, o peito fica cheio, você se sente cansado, tem acúmulo de secreção. Então isso mudou muito pra mim, agora que minhas células estão funcionando melhor. Então eu respiro melhor, eu acordo me sentindo melhor, tenho menos infecções pulmonares. É uma transformação de vida", comemora. "Eu estava trabalhando antes com esse medicamento e via, já no laboratório, como ele era potente. E agora, finalmente ver no meu corpo é algo que eu não sei nem como explicar. É muito, muito maravilhoso. Eu espero que todo mundo possa ter acesso a esse tipo de tratamento.” Ainda existem muitos pacientes com outras mutações raras que não são elegíveis a esse medicamento. Por isso, Miriam avalia que eles precisarão de uma nova tecnologia. “Essa nova tecnologia é uma terapia de RNA-mensageiro, que agora está bem famoso por causa das vacinas. É uma terapia que, como funciona antes do defeito da proteína – que é o que causa a fibrose cística –, vai servir para todos os pacientes, independentemente da mutação que eles têm", ressalta. "Acho que o que estou trabalhando agora é relevante para os pacientes de uma forma geral no mundo todo e, mais especificamente, no Brasil, onde menos pacientes são elegíveis para a droga que já está no mercado atualmente.”    

Johnny and BW are joined by Dukes of Hazzard and Smallville star John Schneider.  Johnny discusses how he and John became friends and how he ended up working on several of John's films.  John also tells us about  Bo's Extravaganza an action and music packed event held on his property in Louisiana every Spring.  He also discusses his unique way of finding inspiration for some of his films and music.  If you are interested in checking out some of his music or films (you might recognize someone in a few of the films), go to his website https://johnschneiderstudios.com/This podcast is proudly brought to you by Johnny Packer Eyewear where a portion of every sale goes toward the CF Foundation.  Support the show (https://www.patreon.com/Johnnypacker1181)

Ella Balasa is a patient advocate and a person living with cystic fibrosis. Diagnosed at 18 months old, cystic fibrosis (or “CF”) is a life-limiting, invisible, chronic, and rare lung disease. Since early childhood, Ella has had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of the disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. Her disease is becoming visible as she requires using supplemental oxygen with physical activity. But despite having 28% lung function, she’s never let it be her excuse.With an academic background in biology, Ella is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about the value of patient voice in research as well as her experience with phage therapy as a previous speaker at the FDA, the Milken Institute's Future of Health Summit, and other conferences.  She is deeply involved in the CF community through being a director of the US Adult CF Association, serving as a member of research committees for the CF Foundation, and through her passion for writing. Ella writes about her research experiences and introspectively about the hardships, yet triumph that comes with living with a chronic illness. Through these opportunities, she provides a scientific voice and hopes to encourage empowerment in patient communities. In her free time, Ella enjoys cooking, drawing, spending time with friends, and traveling when she can. To learn more about her work and experiences visit, www.ellabalasa.com.Below are links you can include:Website: www.ellabalasa.comInstagram Handle:  @thisgirlellaTwitter: @ellabalasa1Support the show (https://www.patron.com/findyourrare)

Marjorie McGee and Jackeria Beard talk about the Ijeoma Oluo's book So You Want to Talk About Race. In this series we make mistakes, talk about difficult topics in the wrong way, and try to understand each other better. ------------------------- College of Central Florida offers equal access and opportunity in employment, admissions and educational activities. The college will not discriminate on the basis of race, color, ethnicity, religion, gender, pregnancy, age, marital status, national origin, genetic information, sexual orientation, gender identity, veteran status or disability status in its employment practices or in the admission and treatment of students. Recognizing that sexual harassment constitutes discrimination on the basis of gender and violates this policy statement, the college will not tolerate such conduct. CF Speaks would like to thank the CF Foundation for their generous support for this program. We would also like to thank the Webber Gallery for housing our podcast studio. --- Send in a voice message: https://anchor.fm/cfspeaks/message

Shannah is the reigning Miss Vermont USA. She currently works for Raytheon Technologies as an Import Specialist in their Global Trade department. She acts as a mediator between international partners and their site's project managers, to ensure the importation and exportation of goods follow government regulation. After the loss of her sister to Cystic Fibrosis, Shannah works very closely with the CF Foundation as an advocate and board member of Tomorrow's Leaders, a CF young professionals organization. She also owns a blog called Uniquely Me that celebrates confidence in women with mental and physical differences. Outside of work and pageantry, Shannah loves to write, volunteer, hike and be outdoors, and spend time with family. -- Are you ready to ace your interview with confidence and authenticity? Are you ready to Breakthrough and finally WIN?! Download the FREE Breakthrough Blueprint here https://bit.ly/3duRwLA for a step-by-step plan to achieving your dreams. -- Would you like more direction and consistency in your life? Maybe its time to surround yourself with other like-minded women who are also wanting to level up their mindset! Join the Winners Circle coaching program for pageant girls who are serious about taking home the crown! It's time to create the life that you ultimately desire and with this program you will be equipped with the courage and confidence to live out your purpose. Learn more at https://bit.ly/2Y2pvVk Follow Tori Kruse: Instagram: https://www.instagram.com/misstorikruse/ Facebook: https://www.facebook.com/misstorikruse Twitter: https://twitter.com/MissToriKruse LinkedIn: https://www.linkedin.com/in/torikruse/ Podcast: https://apple.co/2LHbyq4

Dr. Janna Jones discusses Do the Right Thing (Spike Lee, 1989). She gives political and cultural context for the time, exposes the change Public Enemy brought to rap music, and notes the duality of Love/Hate punctuated by moments of anger and moments of tenderness throughout the film. This discussion is augmented with short clips from the film and other useful media. ----------------- Please be aware that while some strong language was edited from the episode, it was not always possible to do so. There is still strong language that may not be appropriate for younger children. ----------------- College of Central Florida offers equal access and opportunity in employment, admissions and educational activities. The college will not discriminate on the basis of race, color, ethnicity, religion, gender, pregnancy, age, marital status, national origin, genetic information, sexual orientation, gender identity, veteran status or disability status in its employment practices or in the admission and treatment of students. Recognizing that sexual harassment constitutes discrimination on the basis of gender and violates this policy statement, the college will not tolerate such conduct. CF Speaks would like to thank the CF Foundation for their generous support. --- Send in a voice message: https://anchor.fm/cfspeaks/message

Faculty and students react to Spike Lee's Do the Right Thing (1989). Connections are made to the current politics of Black Lives Matter, Martin Luther King and Malcolm X, and the film's reception when it was released. ----------------- College of Central Florida offers equal access and opportunity in employment, admissions and educational activities. The college will not discriminate on the basis of race, color, ethnicity, religion, gender, pregnancy, age, marital status, national origin, genetic information, sexual orientation, gender identity, veteran status or disability status in its employment practices or in the admission and treatment of students. Recognizing that sexual harassment constitutes discrimination on the basis of gender and violates this policy statement, the college will not tolerate such conduct. CF Speaks would like to thank the CF Foundation for their generous support. --- Send in a voice message: https://anchor.fm/cfspeaks/message

Infection prevention is not a new concept for the cystic fibrosis (CF) community, but COVID-19 is different. This episode highlights how the CF Foundation, the Care Center Network, patients, and families partnered together in response to the challenges of life during a pandemic. (Originally recorded September 24, 2020) Moderator: Gretchen Winter, MD Panelists: Patrick A. Flume, MD; Albert Faro, MD; and Ginger Birnbaum For more tools to help in the fight against COVID-19, visit CHEST's COVID-19 Resource Center at chestnet.org/COVID19.

Shannah Weller is the reigning Miss Vermont USA, and is looking forward to representing Vermont at the Miss USA competition.  She has been involved in several community service projects and is passionate about helping others succeed. After the loss of her sister to Cystic Fibrosis, Shannah now works very closely with the CF Foundation as an advocate and board member of Tomorrow’s Leaders, a CF young professionals organization. She also owns a blog called "Uniquely Me" that celebrates confidence in women with mental and physical differences. Outside of work and pageantry, Shannah loves to write, volunteer, hike, be outdoors, and spend time with family.  Follow Shannah Weller:  www.facebook.com/MissVermontUSA/ www.instagram.com/missvtusa https://uniquelyme.shannahweller.org/ Follow SASH Says Podcast:  www.facebook.com/sashsayspodcast www.instagram.com/sashsayspodcast

As the world awaits the release of the filmed adaptation of Lin-Manuel Miranda‘s HAMILTON – arriving globally on Disney+ on Friday 3rd July – The Convention Collective has been incredibly lucky to be able to talk to one of the ground-breaking cast members of the original Broadway run, reprising his role of Aaron Burr for the film: Sydney James Harcourt is a fascinating performer and Nadia Kean-Ayub was granted time to talk to him about his time on the most popular and most culturally affecting musical in living memory… BIOGRAPHY Sydney James Harcourt was born and raised in Detroit, the unexpected outcome from the chance meeting of a touring jazz pianist and a public-school English teacher. He was an Original Cast Member of Broadway’s Hamilton where he was cast as James Reynolds and made history as one of the only people to play almost every male lead in the show including Jefferson, Lafayette, Washington, King George and ultimately taking the role of Aaron Burr after Leslie Odom Jr departed. He reprised his role in the 2020 release of HAMILTON THE MOVIE on Disney+, releasing July 3rd 2020. He has appeared on and off-Broadway, starring in productions such as Disney’s THE LION KING (Simba), Green Day’s AMERICAN IDIOT, and was most recently seen as Joe Scott in the critically acclaimed original American cast of Bob Dylan’s GIRL FROM THE NORTH COUNTRY at the Public Theater. He has appeared on television and film in Blue Bloods, NCIS, Elementary, Younger, The Good Wife, Law and Order, and Disney’s Enchanted. A Grammy-award winner and sought after New York vocalist, he was the featured artist at the US Open Finals live broadcast honouring the 50th anniversary of Billie Jean King’s Triple Crown, rocked Carmello Anthony’s star-studded wedding, opened for Donna Summer, and has worked across the aisle as the entertainment at both the Republican and Democratic National Conventions. He opened the Museum of the American Revolution (introducing Vice President Joe Biden), was invited to perform at the White House at their Children’s Educational initiative, and is a go-to for corporate and charitable organizations like The Robin Hood Foundation, AFRMC, MCHF’s Diamond Ball, the CF Foundation, and HJTEP, tailoring unique theatrical/concert performances at galas and events around the country. For the better part of the last decade, Sydney has been a fixture at most of the legendary ballrooms in New York City including the Rainbow Room, the Plaza Hotel, Gotham Hall, the American Museum of Natural History, and the Metropolitan, Yale, Harvard, and Lamb’s Clubs. HARCOURT AND HAMILTON Harcourt was one the only openly LGBTQ cast member in the Original Cast and is married to an American Immigrant which have some great parallels to the Hamilton story. Due to the fact that he was one of the only openly gay cast members, and being cast in masculine straight roles, he has a unique perspective on the show that I think you will find fascinating. (ALSO, FUN FACT – the filmmakers filmed HAMILTON THE MOVIE at the same time as doing the Tonys performance and still doing eight shows that week!)

On today's episode Michaela interviews Rebekah Farley.  Rebekah is a plus size model and is known for her beautiful face on QVC but her life off of the set is about being a wife and mom to two kiddos.  Life changed the moment her sweet baby girl was born and then really changed when she found out she has Cystic Fibrosis.  Rebekah has some amazing life lessons to share and together they have worked alongside of the Cystic Fibrosis Foundation to raise awareness and money to find a cure for this disease.  The hope is that this episode can bring awareness of what CF is but also allow you to have a new perspective on life and an appreciation for health. Madelynn is a rockstar and so is her momma!  We celebrate them both! Welcome to the table!  We would love to see our community show up for CF so you can donate to the CF Foundation https://www.cff.org/give-monthly/Follow Rebekah @rebekah_plusmodelFollow @cf_foundation www.cff.org/Follow Michaela @michaelabellemichaelabelle.co

We were SO excited to have Tori Church and her mom, Natalie, at our Sunday Lunch table. Tori is an amazing 13 year old student, athlete, and baker. She was a contestant on season 7 of Kids Baking Championship on Food Network. We were SO excited to meet our first reality TV STAR! And she brought us cupcakes! Tori tells us what happens behind the scenes of reality TV. It's shocking y'all! We have lots of questions and opinions, which is a shock to no one. Katie also gets real about her feelings about a certain beverage. Tori also talked about the CF Foundation of Nashville, the support they've provided her and her family, and the CF Walk. You can watch Tori's season of Kids Baking Championship on Hulu, Comcast On Demand, or HERE. Check out Tori's business - Crumbs Bakery! Let us know how much you love Tori! On Instagram and Twitter @sundaylunch3.

We were SO excited to have Tori Church and her mom, Natalie, at our Sunday Lunch table. Tori is an amazing 13 year old student, athlete, and baker. She was a contestant on season 7 of Kids Baking Championship on Food Network. We were SO excited to meet our first reality TV STAR! And she brought us cupcakes! Tori tells us what happens behind the scenes of reality TV. It's shocking y'all! We have lots of questions and opinions, which is a shock to no one. Katie also gets real about her feelings about a certain beverage. Tori also talked about the CF Foundation of Nashville, the support they've provided her and her family, and the CF Walk. You can watch Tori's season of Kids Baking Championship on Hulu, Comcast On Demand, or HERE. Check out Tori's business - Crumbs Bakery! Let us know how much you love Tori! On Instagram and Twitter @sundaylunch3.

MaryBeth Hyland believes that we all share the desire to know and return to our authentic selves, at work, home and within. She has built a sterling reputation as a builder of corporate cultures and a so-called "Millennial Specialist". Following her successful and high-profile tenure at a global non-profit, she used her expertise to start her own company and then helped found the Tomorrow’s Leaders program of the CF Foundation. But a lot of that success came from a childhood that was marked by deep trauma. In this month's episode, she explains to us how you can extract what you need from past pain, and leave the rest behind.

In our new series: Raremark Voices, we invite extraordinary people living with rare diseases to talk about their stories, experiences, and expectations for the future. In this first episode, we welcome two members of the cystic fibrosis community, Oli and Nancy, to talk with us about what it's like living with cystic fibrosis, their experiences with current treatments, and their views and expectations for new developments in the future. Our guests: Oli Rayner Oli was born in Birmingham, UK in 1975 and diagnosed with cystic fibrosis at the age of 3. Oli has worked with CF Trust, CF Foundation, CF Europe, EURORDIS, EMA and Cochrane; and has been a named author on 6 CF research papers published in peer-reviewed journals. Having been on the waiting list for just over 2 years, Oli received a double lung transplant in 2017 which has transformed his health and outlook. He is now a regular runner, a keen traveller as well as being an active member of the CF community. Nancy Paradis Nancy is a mother of two, based in Kentucky, US. Her daughter, Mallory, was diagnosed with CF in 2016 at the age of 9. Their road to diagnosis was a long and challenging one, but since then, Nancy has become an active member of the CF community with her story that will resonate with many families in similar positions.

What makes a hero? My parents have both told me at different points of time that I am their hero. I really don't feel like a hero so this got me thinking about what it means to BE one. The dictionary describes a hero as someone who “is noted for courageous acts or nobility of … Continue reading "35: The Making Of A Hero – CF Foundation Speaker Highlight" The post 35: The Making Of A Hero – CF Foundation Speaker Highlight appeared first on Mandy B. Anderson.

What makes a hero? My parents have both told me at different points of time that I am their hero. I really don’t feel like a hero so this got me thinking about what it means to BE one. The dictionary describes a hero as someone who “is noted for courageous acts or nobility of character.” Allow me to take a few moments to share with you some of my heroes in the world of cystic fibrosis, along with what I’ve learned on my own journey of living courageously. Earlier this month I had the privilege of speaking at an event for the Cystic Fibrosis Foundation, and today’s episode is your chance to be inspired by that talk. I called it: The Making Of A Hero. If you’d like to learn more about the cystic fibrosis foundation, and how you can be a hero to countless lives around the world that battle cystic fibrosis, visit www.cff.org. Like what you heard here and want me to join you as a speaker for your next event? Visit www.raymateam.com/speaking to start the conversation and learn more about how we can make that happen!

Another special episode of Groundhog Minute with the finals of the Cystic Fibrosis Cage Match Movie Trivia Tournament Fundraiser. To learn more about CF and the CF Foundation and to donate go to passion.cff.org/mxm-trivia-cage-match Your host for the Cage Match is Dave Pallas. The championship round of trivia took place on August 24 at the … Continue reading "2019 Cystic Fibrosis Cage Match Movie Trivia Finals"

Jennifer Griego talks to Dr. Bob Beall about his time at the Cystic Fibrosis. Dr. Beall worked for the CF foundation for 35, and was the president and CEO for 21 years; he retired in 2015. The CF gene was found and identified 30 years ago, so he talked the progress that the CF Foundation has made since then. They talk about the evolution of the CF Foundation, the medications for cf patients and the overall life of CF people. Topics Discussed: the Cystic Fibrosis Foundation, working at the CF Foundation, identifying the CF gene, creating medications to treat CF, venture philanthropy, funds to the CF Foundation, growth of the CF Foundation and the evolution of CF patients More Info on Guests Article about Dr. Bob Beall: https://www.cff.org/News/News-Archive/2015/Cystic-Fibrosis-Foundation-Announces-Leadership-Transition/ Cystic Fibrosis Foundation: https://www.cff.org Please leave a review or contact Jennifer if you liked this podcast or have anything you would like to hear. More Info on Host Jennifer Griego Jennifer Griego is 17 years old and goes to high school in Scottsdale Arizona. Her Parents are Carole Griego M.D. and Bob Griego M.D. She has two brothers, David and Timmy Griego, and loves to spend time with her family. She has a cystic fibrosis - a lung disease - and still lives life to the fullest as a big game hunter and high school tennis player. Journeys with Jen Instagram:  https://www.instagram.com/journeys_with_jennifer_griego/ Personal Instagram: https://www.instagram.com/jen_griego/ Facebook: https://www.facebook.com/jennifer.griego.1806

Another special episode of Groundhog Minute with round 3 of the Cystic Fibrosis Cage Match Movie Trivia Tournament Fundraiser. To learn more about CF and the CF Foundation and to donate go to passion.cff.org/mxm-trivia-cage-match To have your donation help Sean and the North Atlantic Coalition buy clues for the trivia, put “The North Atlantic Coalition” … Continue reading "2019 Cystic Fibrosis Cage Match Movie Trivia Round 3"

Another special episode of Groundhog Minute with round 2 of the Cystic Fibrosis Cage Match Movie Trivia Tournament Fundraiser. To learn more about CF and the CF Foundation and to donate go to passion.cff.org/mxm-trivia-cage-match To have your donation help Sean and the North Atlantic Coalition buy clues for the trivia, put “The North Atlantic Coalition” … Continue reading "2019 Cystic Fibrosis Cage Match Movie Trivia Round 2"

Welcome to a special episode of Groundhog Minute bringing you round 1 of the Cystic Fibrosis Cage Match Movie Trivia Tournament Fundraiser. This is the second year movies by minutes hosts have participated in this fundraiser to benefit the Cystic Fibrosis Foundation. To learn more about CF and the CF Foundation and to donate go … Continue reading "2019 Cystic Fibrosis Cage Match Movie Trivia Tournament Fundraiser"

When his son, Nicholas, was diagnosed with cystic fibrosis, Sal Capano became a dedicated and determined volunteer for the CF Foundation. He created the Care Today…Cure Tomorrow event and never missed an opportunity to educate the world about CF and recruit people to help in his quest to raise funds and find a cure for Nicholas and everyone else who battles the disease. Sal Capano passed away in 2007. In tribute, his wife Lauri and a group of Sal’s friends, affectionately known as “Sal’s Pals,” continued his “Care Today…Cure Tomorrow event. Nine years ago, Lauri Capano, David Greenberg and Michael Rankin added a wine-tasting element to the dinner event, and it evolved into what is known today as "The Wine Opener. Sip...Savor...Cure!” On October 18, 2019, Event Chair Rene Stern invites everyone to come together and enjoy rich cuisines, fine wines and the opportunity to dance the night away. r.  WHAT IS CYSTIC FIBROSIS? Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In the US, more than 30,000 people are living with cystic fibrosis (more than 70,000 worldwide). ABOUT THE CYSTIC FIBROSIS FOUNDATION The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Aging Younger Radio is a media sponsor for the Cystic Fibrosis Foundation and tonight’s show is dedicated to educating and fund raising for the search for a cure.  To make donations and or purchase tickets to attend the Wine Opener, please go to:  https://events.cff.org/wineopener2019/agingyounger  

When his son Major was diagnosed with CF, Iowa native Drew Strube's world began to grow. From local fundraising events to March on the Hill, Drew and his wife Jaci jumped in with both feet to help find a cure for their son, and for all people with CF. Drew has come to find a passion for mentoring the next generation of fundraisers and advocates by taking them under his wing the same way so many have done for him and Jaci over the last four years. We talked with Drew about that drive and how it's pushed him in his career and volunteer life. He also shares his experience as the CF Foundation’s National Advocacy Co-Chair, the virtues of small town living, and the awe-inspiring history of Washington, DC.

This is our final episode for 2018! Join us as we sit down with the founder of the Rock CF Foundation and the race director of the Rock CF races Emily Schaller. Rock CF is a non-profit dedicated to educating the world about cystic fibrosis and giving those living with CF the tools to lead healthy lifestyles.  Episode Notes:  Official sponsor - RUNdetroit https://www.run-detroit.com/  RUNdetroit is Detroit's specialty shop for all things running and walking. Located in the Midtown neighborhood, they provide weekly run groups, track workouts, shoe fittings and advice for runners and walkers of all levels. Rock CF: http://letsrockcf.org/ RTD FB Page: https://www.facebook.com/Runningthedreamthepodcast/ RTD Group Page: https://www.facebook.com/groups/642456386085350/?source_id=310216486134909 RTD Book Club https://www.facebook.com/groups/2298149413746039/ 

Some people say you can boil life down to a handful of moments that define our direction. Reef McIntosh attributes his big break as a pro-surfer for Quicksilver to one wave that catapulted him into superstardom. Taming it was one part luck, one part skill, and a dash of just knowing where to be on the right day. Today, Reef also supports the CF Foundation at the annual surfing inspired gala, Pipeline to a Cure. The event has raised millions of dollars in the search to cure cystic fibrosis.

Travis Flores is a philanthropist and award-winning author. We are lucky enough to know Travis through our mutual friend Shira Strongin from Sick Chicks, featured in episode 045. Travis talks about how he first encountered the disability community when he was eight-years-old, when he first entered the hospital. He was diagnosed as having cystic fibrosis, but at that point, he seemed very healthy. He had trouble relating to other kids in the hospital with various forms of disability, so he did not make any meaningful connection with anyone in the community of people with disabilities.   Travis left the hospital and continued living the same life as before, but with the spectre of disability quietly haunting him. His personal recognition of what his CF diagnosis meant for him really struck him in his  teenage years. By age 16, he had written a book about his journey with CF, and went on a book tour. He graduated from high school that same year, and got an undergraduate and graduate degree by the time he was 22. He felt a drive to accomplish as much as he could as soon as he could, since his future with the CF diagnosis was uncertain. However, he realized that his personal achievements, though huge and important, weren’t the totality of life. Only when he was away at college and had just split up with his long-term girlfriend, did the barely-there spectre become an unmistakable bloated monster. He couldn’t hide from his disability any longer. He felt trapped. He realized that he was alone.   Travis found that in addition to his personal accomplishments, a way to fulfill the loneliness he felt was to jump headfirst into the disabled community, a group of people he spent his early teenage years trying to avoid. A big way he did that was by becoming a philanthropist, raising money for organizations such as the Make-A-Wish Foundation, the CF Foundation, and many others.   Thank you for joining us, Travis Flores! Check out his book, The Spider Who Never Gave Up! And his latest venture, a TV series called Sorta Supportive.

George B. Mallory, MD is a pediatric pulmonologist at Texas Children's Hospital. In 2001, he joined the Baylor College of Medicine pediatric faculty and founded the TCH Lung Transplant Program. Since 2005, Dr. Mallory has also been medical director of the region's only pediatric pulmonary hypertension program. In this episode, Dr. Mallory discusses his experience with lung transplantation in children with pulmonary hypertension and cystic fibrosis. Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: www.phaware.global/donate #phaware #phawareMD @BCM_PCCSM @TexasChildrens @CF_Foundation

In honor of Rock CF Foundation's 10-year anniversary as an IRS-approved 501c3 nonprofit corporation, here is the re-release of the premier episode of Get After It with Emily Schaller, Rock CF's indomitable founder and CEO. The Rock CF Foundation is dedicated to increasing the quality of life for people with Cystic Fibrosis. With the help of a core group of volunteers, the Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis.   Happy birthday, Rock CF!!   Let's get after it!

Senior Development Director at the Cystic Fibrosis Foundation Gretchen Rohleder and Committee Chair Chris Harris joined us to talk about the 6th Annual Brewer's Ball coming up Oct 15th. We discuss what's new this year for the Ball, different ways you can help the CF Foundation, and perks of getting the VIP ticket. The post Webcast- 2016 Brewer’s Ball with Chris Harris and Gretchen Rohleder appeared first on Cheers Charlotte Radio | Craft Beer and Homebrew Podcast.

Volume 2, Issue 8.In 2002, the CF Foundation convened a consensus conference. This consensus conference developed specific recommendations for the prevention of bone disease and the optimal supplementation of vitamin D for patients with cystic fibrosis. The original consensus guidelines did not have any actual demonstration in cystic fibrosis patients, and most of this was expert opinion. And at this time we are actually trying to test these guidelines to see if they hold true in those with cystic fibrosis. Since patients with cystic fibrosis are living longer, they are developing more complications, such as bone disease, and insuring that vitamin D supplementation is adequate and figuring out new ways to prevent bone disease is becoming more and more important for CF patients. In the discussion today, Peter Mogayzel, MD and Dianna Green, MD, of the Johns Hopkins University School of Medicine, will focus on the basis of the current vitamin D recommendation for patients with cystic fibrosis, describe the potential for success of various strategies for treatment of vitamin D insufficiency, and compare the potential benefits and risks of using bisphosphonates for the treatment of osteoporosis in patients with cystic fibrosis.The post Featured Cases: Vitamin D and Bone Health appeared first on DKBmed Radio. Hosted on Acast. See acast.com/privacy for more information.