Podcasts about muscular dystrophy association mda

When Michael Kennedy first stepped into the CFO office at the Muscular Dystrophy Association (MDA) in 2018, he was surprised to learn that the association was spending $8 million annually on office space across the country. “Why were we in these offices?,” asks Kennedy, voicing the question that helped to kick off the first of what he now characterizes as a multichapter digital transformation. As it turned out, the 93 offices occupied by the MDA were a legacy of the organization's historic Jerry Lewis Labor Day Telethon, a once-massive annual fundraising event for that had lost its mojo in the Age of the Internet. “MDA wanted to have an office near every local television station that was participating in the Telethon broadcast,” explains Kennedy, who notes that the MDA offices needed to compete with local Girl Scout troops and firefighters to secure fundraising airtime on the local affiliates.    “But the fact is that we had stopped doing the Telethon 8 years before I arrived,” reports Kennedy, who adds that the $8 million that the MDA had once paid in real estate fees now goes entirely to support MDA's causes and mission—a development that the pandemic no doubt helped to accelerate. He continues: “We now have a 100 percent remote office environment.” Still, the pandemic put much of the transformation at the MDA into a holding pattern, as fundraising events and activities came to a near standstill. According to Kennedy, however, the MDA is now on its way to matching and even surpassing pre-pandemic fundraising levels, as it opens yet another impressive chapter in its healthcare history. –Jack Sweeney

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 

Join us today for a very special episode featuring Buffalo Bills player, Nyheim Hines and Devan Kline. Professional sports are more than just a pastime; for many fans, they become a core part of their identity. This phenomenon is not limited to a specific team or sport - it's a universal experience that transcends age, gender, and cultural background. So why do professional sports become such a defining part of our identity? For starters, sports provide a sense of community and belonging. Fans feel a sense of kinship with fellow supporters, sharing in the highs and lows of the season. Being part of a fan community can be especially beneficial for those who may feel isolated or disconnected in their everyday lives. Sports also offer a sense of purpose and achievement. Fans feel a sense of pride and accomplishment when their team wins, as if they played a role in the victory. This sense of purpose can help fans feel more motivated and focused in other areas of their lives. Lastly, sports offer a form of escapism. Fans can immerse themselves in the game, forgetting about their problems and stresses for a few hours. This can be a welcome break from the pressures of work, relationships, and other responsibilities. Overall, the reason why professional sports become such a defining part of our identity is due to the sense of community, purpose, and escapism they offer. So the next time you cheer on your team, remember that you're not just watching a game - you're embracing a part of your identity. ______________________ Muscular dystrophy can be a challenging condition to live with, but with the right knowledge and support, it is possible to maintain a fulfilling life. By understanding the implications of the condition, seeking out a supportive community, and utilizing the resources available, you can navigate the diagnosis and live your best life with muscular dystrophy. _____________________ We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit THIS LINK today!  #BeTheirMuscle 1️⃣ Head to this link 2️⃣ DONATE to help us raise funds for ⁠@mdaorg One mission, one BURN NATION!

Join us today for a very special episode featuring Devan Kline, our co-founder and visionary, joined by Preston Bass, a young boy living with muscular dystrophy, and his mother advocate for the MDA. Muscular dystrophy is a genetic disorder that affects the muscles in the body. It is a progressive condition that worsens over time and can result in severe disability or even death. If you or a loved one has recently been diagnosed with muscular dystrophy, it can be overwhelming and scary. However, with the right knowledge and support, it is possible to navigate the diagnosis and live a fulfilling life with the disease. Understanding Muscular Dystrophy Muscular dystrophy is a group of disorders that affect the muscles, causing weakness and muscle wasting. It is caused by genetic mutations that affect the proteins responsible for muscle function. The most common form of muscular dystrophy is Duchenne muscular dystrophy, which primarily affects boys and typically presents in early childhood. Other forms of muscular dystrophy include Becker muscular dystrophy, limb-girdle muscular dystrophy, and facioscapulohumeral muscular dystrophy. Navigating the Diagnosis If you or a loved one has been diagnosed with muscular dystrophy, it is important to understand the implications of the condition and what to expect. Your doctor will likely provide information about the specific type of muscular dystrophy you have and how it may affect your body over time. It is also important to seek out a support system to help you navigate the emotional and practical aspects of living with muscular dystrophy. This may include family members, friends, support groups, and healthcare providers. Talking to others who have experience with the condition can be especially helpful in understanding what to expect and how to cope. Living with Muscular Dystrophy Living with muscular dystrophy can present a range of challenges, both physical and emotional. However, there are many strategies and resources available to help you manage the disease and maintain your quality of life. Muscular dystrophy can be a challenging condition to live with, but with the right knowledge and support, it is possible to maintain a fulfilling life. By understanding the implications of the condition, seeking out a supportive community, and utilizing the resources available, you can navigate the diagnosis and live your best life with muscular dystrophy. _____________________ We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit THIS LINK today!  #BeTheirMuscle 1️⃣ Head to this link 2️⃣ DONATE to help us raise funds for ⁠@mdaorg One mission, one BURN NATION!

Join us today for a very special episode featuring Buffalo Bills player and MDA advocate, Nyheim Hines and Lily Sander, advocate for the MDA and living with MD. Muscular dystrophy is a genetic disorder that affects the muscles in the body. It is a progressive condition that worsens over time and can result in severe disability or even death. If you or a loved one has recently been diagnosed with muscular dystrophy, it can be overwhelming and scary. However, with the right knowledge and support, it is possible to navigate the diagnosis and live a fulfilling life with the disease. Understanding Muscular Dystrophy Muscular dystrophy is a group of disorders that affect the muscles, causing weakness and muscle wasting. It is caused by genetic mutations that affect the proteins responsible for muscle function. The most common form of muscular dystrophy is Duchenne muscular dystrophy, which primarily affects boys and typically presents in early childhood. Other forms of muscular dystrophy include Becker muscular dystrophy, limb-girdle muscular dystrophy, and facioscapulohumeral muscular dystrophy. Navigating the Diagnosis If you or a loved one has been diagnosed with muscular dystrophy, it is important to understand the implications of the condition and what to expect. Your doctor will likely provide information about the specific type of muscular dystrophy you have and how it may affect your body over time. It is also important to seek out a support system to help you navigate the emotional and practical aspects of living with muscular dystrophy. This may include family members, friends, support groups, and healthcare providers. Talking to others who have experience with the condition can be especially helpful in understanding what to expect and how to cope. Living with Muscular Dystrophy Living with muscular dystrophy can present a range of challenges, both physical and emotional. However, there are many strategies and resources available to help you manage the disease and maintain your quality of life. Muscular dystrophy can be a challenging condition to live with, but with the right knowledge and support, it is possible to maintain a fulfilling life. By understanding the implications of the condition, seeking out a supportive community, and utilizing the resources available, you can navigate the diagnosis and live your best life with muscular dystrophy. _____________________ We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit THIS LINK today!  #BeTheirMuscle 1️⃣ Head to this link 2️⃣ DONATE to help us raise funds for ⁠@mdaorg One mission, one BURN NATION!

The MDA stands for the Muscular Dystrophy Association, which is a nonprofit organization dedicated to finding treatments and cures for muscular dystrophy, ALS, and related neuromuscular diseases. The MDA works to support families affected by these diseases by providing resources, clinical care, and scientific research. The organization also hosts events and fundraisers to raise awareness and funds for research and support programs. Founded in 1950, the MDA has made significant contributions to the field of neuromuscular disease research, including funding the development of new treatments and clinical trials. Through their work, the MDA has helped to improve the lives of countless individuals and families affected by these devastating diseases. We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit the link in our bio today! #BeTheirMuscle

For the rare disease community, there is a common motto “alone we are rare, together we are strong”. Advocacy organizations play this important role in connecting families of rare disease , amplifying their voices and helping to improve health outcomes for people living with rare diseases. Today's podcast guest is Annie Kennedy who has over three decades of experience in advocacy work. A veteran leader in the rare disease patient advocacy movement, Annie joined the EveryLife Foundation in 2018, where she led the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors. If you are new to advocacy work or a seasoned advocate, become inspired by Annie's story to carry forward despite the road to advocacy work is non-stop, exhausting and at times, bumpy with many ups and down. Join this collective energy to advocate for rare diseases research.    Podcast Interview Questions:  1. For over three decades your advocacy work has been critical to amplifying the voices and you are currently the Director of Chief of Policy, Advocacy, & Patient Engagement for the EveryLife Foundation for Rare Diseases. Can you share with our listeners the mission of the EveryLife Foundation? What were major accomplishment made? And how can they get involved? 2. EveryLife Foundation for Rare Diseases also plays important roles in advancing newborn screening advocacy in the United States. What is your vision for how stakeholders across newborn screening and the rare disease community can work together? 3. EveryLife Foundation led a study to assess the total economic burden of 379 rare diseases in 15.5 million individuals in the United States in 2019.  The total economic burden was $997 billion. What were your key takeaways from this important study and how can the results inform researchers, clinicians, policy makers, and other key stakeholders? 4. Prior to the EveryLife Foundation, you were involved in the Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). In that time, you helped lead the legislative efforts around passage and implementation of the MD-CARE Act (2001, 2008, 2014), the Patient Focused Impact Assessment Act (PFIA) which became the Patient Experience Data provision within the 21st Century Cures Act (sec 3001). Congratulations, these are incredibly impactful efforts. Can you tell our listeners  about the ‘behind the scenes' activities that were undertaken to lead these efforts and the implementation strategy.  5. February is a special month. Every year, last day of February is a day to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. What are some rare disease day activities taking place? 6. Are you involved in training the next generation of advocates, and what do you tell them about newborn screening research? 7. How did you know leading advocacy work was your calling? Can you share your career journey? 8. The road to advocacy work is non-stop, and at times, bumpy, do you have any stories of inspiration that keep you going?  9. How can NBSTRN assist in you advocacy work? 10. What does NBS research mean to you?

Mindy Henderson joins Patrick to talk about her life, work, career, and most recent book “The Truth About Things That Suck.” They explore everything from life throwing you curve balls to proactively thinking before things do get hards. You won't want to miss this fun, engaging, and informative conversation. Mindy Henderson gave her first speech at the age of four as the Texas State Poster Child for the Muscular Dystrophy Association (MDA). Mindy later earned a master's degree and worked corporate jobs in high-tech for 20 years, advancing steadily up the corporate ladder. Since then, Mindy has pivoted from her full-time work in the high-tech corporate world to build a platform as a motivational speaker, where she shares her message and the tools she has acquired to help her overcome not only her disability but recovery from two devastating automobile accidents and job losses and more. Mindy currently resides in Austin, Texas, and her podcast "The Truth About Things That Suck" and book of the same name inspire audiences everywhere to overcome their limitations. Learn more at MindyHendersonCo.com

In this week's episode of Fostering Change Rob Scheer talks with Mindy Henderson, author, editor, speaker, advocate. Henderson is the author of THE TRUTH ABOUT THINGS THAT SUCK, A Motivational Speaker, Writer, Coach, Host of The Truth About Things That Suck podcast, guest contributor of “Morning Motivations” on CBS Austin's “We Are Austin” lifestyle morning show and was recently named an “Austin Woman to Watch” by Austin Woman Magazine. After a 20-year career in high-tech, Mindy shifted her focus toward helping others realize their potential and normalizing disability. Driven to build a world that welcomes and includes EVERYONE, Mindy advocates for universal design in air travel, architecture, and fashion. Despite living life from a wheelchair, Mindy's achievements include: ● Bachelor and Master's degrees ● Multiple singing appearances on national television (plus a CD recording with George Strait's guitar and bass players accompanying her!) ● Public speaking addressing thousands of volunteers of the Muscular Dystrophy Association (MDA) and addressing corporate executives for companies such as 7-11, VMware, NXP Semiconductors, 7-Up and CiscoStory Key Notes:

Susan Wright Kenny is the Founder and Chief Do GOODer of Do GOODer Partners, a consulting firm that empowers companies to engage their teams and customers in doing GOOD in the communities where they live and work. Prior to founding Do GOODer Partners, Susan worked for close to 20 years a professional fundraiser supporting the Muscular Dystrophy Association (MDA), Ronald McDonald House Charities (RMHC), and Court Appointed Special Advocates (CASA). While working with MDA, Susan was responsible for the coordination and funding for healthcare clinics, support groups, and summer camps throughout Southern California. As MDA's National Director of Retail Partnerships and Community Engagement, she worked with Albertsons/Vons/Pavilions, Lowe's, Kroger, and other retailers to execute their annual customer engagement events resulting in millions of dollars raised for muscle disease research. While working with RMHC, Susan was instrumental in the National Roofing Contractors Association's first ever national charitable partnership with RMHC. Prior to leaving RMHC, she was the lead fundraiser for the $12 million capital campaign to double the size of the Orange County House. Susan has volunteered her time to plan and fund the Association of Fundraising Professionals education seminar, OneOC's Spirit of Volunteerism Awards, and the Greater Irvine Chamber of Commerce Women of Influence events. In addition, she has been a Board member to Advisors in Philanthropy and currently sits on the Advisory Board for the Extraordinary Lives Foundation. She is a founding member of the 100 Women Who Care Orange County Chapter and volunteers her time for numerous nonprofit organizations. Susan is a graduate of the University of Arizona and has a Human Resource Management Certificate from the University of California, Irvine. She is the proud parent of two incredible teenagers and dreams that one day every person and every company in the world will find their passion partner to do GOOD and create meaningful change. -- Critical Mass Business Talk Show is Orange County, CA's longest-running business talk show, focused on offering value and insight to middle-market business leaders in the OC and beyond. Hosted by Ric Franzi, business partner at Renaissance Executive Forums Orange County. Learn more about Ric at www.ricfranzi.com. Catch up on past Critical Mass Business Talk Show interviews... YouTube: https://lnkd.in/gHKT2gmF LinkedIn: https://lnkd.in/g2PzRhjQ Podbean: https://lnkd.in/eWpNVRi Apple Podcasts: https://lnkd.in/gRd_863w Spotify: https://lnkd.in/gruexU6m #orangecountyca #mastermind #ceopeergroups #peergroups #peerlearning

“Adversity is not an excuse - it is a reason...to thrive and to push ourselves to excel,” writes Mindy Henderson, podcast guest, author, motivational speaker, and advocate as well as the editor in chief of QUEST magazine of the national Muscular Dystrophy Association (MDA).  Despite the adversity Henderson encountered in the workplace and while job searching due to others' assumptions about her being a wheelchair user, she motivated herself to self-advocate and open possibilities.  We encourage you to read her newly released book, THE TRUTH ABOUT THINGS THAT SUCK, to turn your biggest challenge into your advantage. Learn more on her website: https://mindyhendersonco.com/  We would love to hear what you think about this episode. Please leave a comment on our website: https://specialneedscompanies.com/podcasts

In this week's episode of Fostering Change Rob Scheer talks with Mindy Henderson, author, editor, speaker, advocate. Henderson is the author of THE TRUTH ABOUT THINGS THAT SUCK, A Motivational Speaker, Writer, Coach, Host of The Truth About Things That Suck podcast, guest contributor of “Morning Motivations” on CBS Austin's “We Are Austin” lifestyle morning show and was recently named an “Austin Woman to Watch” by Austin Woman Magazine. After a 20-year career in high-tech, Mindy shifted her focus toward helping others realize their potential and normalizing disability. Driven to build a world that welcomes and includes EVERYONE, Mindy advocates for universal design in air travel, architecture, and fashion. Despite living life from a wheelchair, Mindy's achievements include: ● Bachelor and Master's degrees ● Multiple singing appearances on national television (plus a CD recording with George Strait's guitar and bass players accompanying her!) ● Public speaking addressing thousands of volunteers of the Muscular Dystrophy Association (MDA) and addressing corporate executives for companies such as 7-11, VMware, NXP Semiconductors, 7-Up and CiscoStory Key Notes:

On today's episode Nyheim Hines shares how his perspective has changed as he moves through his career in the NFL. Listen in as Nyheim shares the inner secrets of his fitness routine, the importance of focusing on small victories, and how his attention to detail played a critical role in his ability to stay resilient and open to opportunities.   About Nyheim Hines: Nyheim Hines is an NFL running back who currently plays for the Indianapolis Colts. He played college football at North Carolina State and was drafted in the 4th round of the 2018 NFL Draft (104th overall pick) by the Colts. Nyheim is also moving the ball off the field and making an impact as the national spokesperson for Muscular Dystrophy Association (MDA).   Follow Nyheim on Instagram: @nyghtmare Follow Nyheim on Twitter: @TheNyNy MDA Website: https://www.mda.org/   Want to find your own way to Move the Ball toward your goals? Connect with me on LinkedIn: https://www.linkedin.com/in/movetheball/ Buy the Move the Ball book: https://amz.run/5JR6 Follow me on Instagram: https://www.instagram.com/movetheball/ Get your Move the Ball Merch: https://www.wemovetheball.com   See omnystudio.com/listener for privacy information.

Welcome to the NeurologyLive® Mind Moments™ podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, we spoke with Matthew B. Harms, MD, associate professor of neurology, Columbia University, and medical consultant and care center director, Muscular Dystrophy Association (MDA). He spoke about the progress that the field has seen in recent years in improving the genetic understanding of amyotrophic lateral sclerosis (ALS) and the role that big data can play in care, as well as shared his perspective on the impact that advocacy efforts have had on these advances. Episode Breakdown: 2:05 – Major progress in ALS in recent years 4:35 – Key steps forward in genetic testing 7:25 – The understanding of genetics in ALS 9:20 – The role of databases in the care paradigm 11:35 – Neurology News Minute 15:25 – Advocacy's role in the last decade 18:40 – The state of clinical trials for ALS 20:40 – The pipeline of therapies and the future of treatment 24:50 – Importance of continued advocacy for ALS Check out Medical World News' Second Opinion only at medicalworldnews.com The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: National Institutes of Health Launches Phase 1 Trial to Study Epstein-Barr Virus Vaccine Eisai Completes Rolling BLA Submission for Lecanemab to Treat MCI, Alzheimer Disease FDA Approves Oral Version of Edaravone for ALS Thanks for listening to the NeurologyLive® Mind Moments™ podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

Today I'm talking with Keisha Greaves, the founder of Girls Chronically Rock, an adaptive fashion company promoting self-love and confidence in the disability community about passion after a chronic illness. With a lifelong passion for fashion, Keisha's plans were momentarily detailed when she was diagnosed with Limb-Girdle Muscular Dystrophy at age 24. In this episode, she's sharing her journey from diagnosis and finding her way back to her passion and her purpose, launching her fashion line and working to spread awareness of Muscular Dystrophy, and balancing life with chronic illness. What to Listen For: Starting to get weird symptoms in her body The final incident that led her to her diagnosis What life was like prior to her diagnosis Having a passion for fashion from an early age Knowing she wanted to be an entrepreneur from an early age Creating a business plan to launch her own fashion business named after her grandmother Getting her diagnosis and shutting down "I'm thinking, well, she has to have call the wrong patient. Maybe she got the test results mixed up. Maybe she called me by accident, you know, but I knew deep down inside something wasn't right." Googling her diagnosis and what went on in her head Denial and hiding her diagnosis even as she started to use a cane The moment of acceptance "At that moment when I was writing and saying everything out loud, I'm like, wow, I have muscular dystrophy." Finding support on social media Feeling like she's lived in two worlds Still having days of sadness, exhaustion, frustration Don't let social media fool you! The power of connecting with people who have shared experiences "There's nothing. And I mean, nothing, like talking to somebody who gets it knows what it's like living with muscular dystrophy." The difference between talking with a therapist versus talking with a friend or family member The hard pivot after her diagnosis Reaching a point where she wanted not only to put her fashion degree to good use but also to inspire those with chronic illness “My whole new perspective and vision has changed, but still within the fashion industry." The process of learning as she went to get her business started Her goals for the future "I don't just look at it as a Girls Chronically Tock clothing brand, but a Girls Chronically Rock movement." That advice she would give her able-bodied self About Keisha Greaves: Keisha Greaves, the founder of Girls Chronically Rock, has always been passionate about fashion. Born and raised in Cambridge, MA, Keisha has a bachelor's degree in Fashion Design and Merchandising and an MBA. At age 24, she was diagnosed with Limb-Girdle Muscular Dystrophy, and her life changed. But far from being bogged down by it, Keisha decided not only to embrace it but to celebrate Muscular Dystrophy and other chronic illnesses, giving life to her dream of starting a fashion line.Today, Keisha is a motivational speaker who talks about spreading awareness of Muscular Dystrophy, balancing life with chronic illnesses, raising money for causes, advocating for disability, and other related topics. Keisha has been featured in several media outlets like Good Morning America, The Today Show, ABC News, and more! One of her proudest moments is when she was featured in Today Style Heroes 2018. She was featured with other celebrities like Gabrielle Union, Drew Barrymore, Debra Messing, Mindy Kaling, and more, for her inspired clothing line. Keisha has also been the Massachusetts State Ambassador for the Muscular Dystrophy Association(MDA) for two years. She has worked with Massachusetts' Governor, Charlie Baker, and successfully got September 30th officially proclaimed as Limb-Girdle Muscular Dystrophy Awareness Day. Further, she also received the proclamation from Mayor Marc McGovern from the city of Cambridge. Website and social media links:

Keisha Greaves is the founder of Girls Chronically Rock, the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA), a fashion designer and the 2021 MDA National Ambassador. Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, and Herself 360. In this episode we speak with Keisha about her diagnosis, how she coped with and learned to accept MDA, her business and fashion ventures, and her contributions promoting awareness and fundraising for Muscular Dystrophy. Where to find Keisha; Visit her website: www.girlschronicallyrock.com Visit the website for her non-profit, Trust Your Abilities www.trustyourabilities.org Find her on Instagram: www.instagram.com/girlschronically_rock www.instagram.com/trust_your_abilities_ Find her on LinkedIn: www.linkedin.com/in/keisha-greaves-7a1000b Find her on Facebook: www.facebook.com/keishagreaves Check out her podcast: www.anchor.fm/keisha-greaves --- Send in a voice message: https://anchor.fm/keisha-greaves/message

Keisha Greaves is the founder of Girls Chronically Rock, the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA), a fashion designer and  the 2021 MDA National Ambassador.   Keisha has been featured in Good MorningAmerica, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager,  and Herself 360.  In this episode we speak with Keisha about her diagnosis, how she coped with and learned to accept MDA, her business and fashion ventures, and her contributions promoting awareness and fundraising for Muscular Dystrophy.Where to find Keisha;Visit her website:www.girlschronicallyrock.comVisit the website for her non-profit, Trust Your Abilitieswww.trustyourabilities.orgFind her on Instagram:www.instagram.com/girlschronically_rockwww.instagram.com/trust_your_abilities_Find her on LinkedIn:www.linkedin.com/in/keisha-greaves-7a1000bFind her on Facebook:www.facebook.com/keishagreavesCheck out her podcast:www.anchor.fm/keisha-greaves

Summer camp is a rite of passage for American children, and thanks to the Muscular Dystrophy Association (MDA), NALC's official charity, children with muscular dystrophy and other neuromuscular diseases are enjoying the experience again this summer.   Read here

Show NotesMany people search for their purpose.  For Mindy Henderson, purpose found her.  She gave her first speech at the age of 4.  Mindy was the Texas representative for the Jerry Lewis Muscular Dystrophy Association (MDA) Telethon.  I was honored to talk with speaker, author and coach Mindy Henderson about change, determination and life as an entrepreneur.     She was recently recognized by Austin Woman Magazine as a Woman to Watch.  About Mindy:Mindy Henderson is a Motivational Speaker, Writer, Coach, Host of “The Truth About Things That Suck” podcast and guest contributor of “Morning Motivational Tips” on CBS Austin’s “We Are Austin” lifestyle morning show.Living life from a wheelchair, the challenges Mindy has overcome have cultivated the very skills she needed to achieve almost every goal she's ever set for herself.  This makes her uniquely qualified to motivate others to see their potential. Despite living life from a wheelchair, on her list of credits are:• Bachelors and Masters degrees• A 15-year career in software, leading teams of highly skilled professionals• Multiple singing appearances on national television• A CD recorded with George Strait’s guitar and bass players accompanying her• A long list of public speaking credits, addressing thousands of volunteers of the Muscular Dystrophy Association (MDA), MDA staff and corporate executives• A one-on-one battle fought and won with the government of China and a successful trip to one of the least wheelchair accessible countries on the planet to adopt her daughter• A passion for making the impossible, possible.Mindy helps people see how to live more productively and positively, to roll with the punches and to work to accomplish all they are capable of.  Her mission is to move and inspire people to realize when they take responsibility, stop making excuses and OWN their adversity, they become better, stronger people and their potential is revealed. Host of “The Truth About Things That Suck” PodcastWebsite - www.mindyhendersonspeaks.com Instagram - https://www.instagram.com/mindyhendersonspeaks/

***May is ALS Awareness Month***Travis Boersma, co-founder and executive chairman of Dutch Bros, the nation's largest privately held drive-thru coffee company, invites you to Drink One for Dane on May 14th. 12 years ago, his brother and co-founder, Dane Boersma, died after being diagnosed with ALS.  To honor his memory and raise awareness about the disease, the Boersma family and Dutch Bros started Drink One for Dane.  On Friday, May 14th, the company will donate a portion of proceeds from its more than 400 shops to the Muscular Dystrophy Association (MDA), the leading non-profit organization in ALS research, care, advocacy, educational and professional programming. For more information, or to make a donation, please visit www.dutchbros.com

This week we are speaking with a Muscular Dystrophy Warrior!   Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline. One of Keisha’s proudest moments is being featured In Today Style Heroes among other celebrities such as: Gabrielle Union, Drew Barrymore, Debra Messing and more. Another proud moment of Keisha is being featured on Channel 5 ABC Chronicle sharing her story. She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene. Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge.

Meet Keisha Greaves… she is a motivational speaker, the founder of Girls Chronically Rock, that offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene. Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day. Listen in as she tells us how she committed her life to change….. Quote: “If you have an idea or something you want to do….. Go for it!” Links to finds out more about our VIP guest: Website: https://www.girlschronicallyrock.com Instagram: https://www.instagram.com/girlschroni... Facebook: https://www.facebook.com/keishagreaves E-mail: girlschronicallyrock@gmail.com --- Send in a voice message: https://anchor.fm/keisha-greaves/message

Meet Keisha Greaves… she is a motivational speaker, the founder of Girls Chronically Rock, that offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA).  She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene.   Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week.  One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day.   Listen in as she tells us how she committed her life to change…..   Quote: “If you have an idea or something you want to do….. Go for it!”   Links to finds out more about our VIP guest: Website: https://www.girlschronicallyrock.com Instagram: https://www.instagram.com/girlschronically_rock Facebook: https://www.facebook.com/keishagreaves E-mail: girlschronicallyrock@gmail.com Podcast: https://www.girlschronicallyrock.com/pages/podcast   GOFUND ME:  https://www.gofundme.com/f/handicap-accessible-vehcile?utm_medium=sms&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=ccb73e02a1a44c0aa22b1c55f7b96d7a   Listen to other C2C shows here: https://www.selfliftnetwork.com/c2c-podcast/   Watch the video version here: https://youtu.be/EgbuuGDimM8   Thank you once again for checking out the Commit 2 Change podcast. Remember you can listen with ease in your car or on your phone via iTunes, Stitcher, Spotify, and Podbean.   Check out more information or to become a guest check out our website!  www.selfliftnetwork.com

MentionsALinkerCMT Awareness MonthWebsite/Blog, Twitter, & Instagram HandleFacebook, @gayleweenie on InstagramName *Lisa WeinerDisorder InfoWhat is your disorder? *Charcot-Marie-Tooth diseaseHow To Vote By Mail In California: 2020 General Election: August 25, 2020 (full article detailed below).https://patch.com/california/across-ca/how-vote-mail-california-2020-general-election“Once your mailed-in ballot is completed, it can be inserted into the provided envelope and sent to your local county elections office.You can also return your ballot by:Bringing it in-person to any nearby polling place or elections office before 8 p.m. on Election Day, November 3.Dropping it into one of your county's ballot drop boxes before 8 p.m. on Election Day.Authorizing someone else to return the ballot on your behalf. (If you do this, you must fill out the authorization form on the back of the ballot envelope you receive.)If you are not yet registered to vote, you can register online here, up until October 19. California also offers same-day registration, which can be done on Election Day at your local polling place.If you need to change your address to vote by mail, you can:Write to your local county elections officialFill out this online application, print, sign, and date it, and then mail it to your county elections office. (Also available in Spanish, Chinese, Hindi, Japanese, Khmer, Korean, Tagalog, Thai, and Vietnamese)Or, fill out the application printed on the voter information guide, which is mailed to every voter by their county elections office before the electionVisit the California Secretary of State's website for more information about how to vote in this fall's General Election.”CA 2020 Election: Voting In Person; What To Know: September 30, 2020 (click link below for full article)https://patch.com/california/across-ca/ca-2020-election-voting-person-what-knowMain points:*Governor Gavin Newsom made an executive order to mail absentee ballots to every registered voter in California.Though everyone will get a ballot in the mail, some will inevitably need to visit a polling place for many reasons — for lost or damaged ballots or for language or disability assistance. Some will need to register last minute on Election Day, which state law allows at polling sites.In person voting: begins as early as October 31 and ends on election day, Tuesday, November 3, at 8 PM. There will be fewer polling places per county than usual, so as to limit spiraling lines/congestion and mitigate spread of COVID-19. Also, due to pandemic, many usual polling locations i.e., retirement homes, community centers and churches are closed.Find your polling place by using this form on the California Secretary of State's website. California Secretary of State, Elections Division, 1500 11th St., 5th Floor, Sacramento, CA 95814 Phone: (916) 657-2166, (800) 345-VOTE (8683), (800) 833-8683 (TTY/TDD) Website: www.sos.ca.gov/elections/Register to vote or check if your registration status is active here.If voting in person, you should bring your mailed ballot with you to your nearest polling place. Since all CA voters were mailed ballots this year, this is proof that you didn't already mail your ballot and vote twice.However, if you forget to bring your ballot to polling place, or it became lost in the mail, you may need to vote provisionally. This means that your vote may be subject to a screening. Officials may want to verify your registration status or confirm that it wasn't already mailed. With these extra steps, a vote may not be counted on Nov. 3, but it will eventually.Also, voters should arrive with the proper COVID-19 protective gear. Poll workers are instructed to keep their distance and wear masks. They will provide face coverings to voters who need them.Voting with a Disability: Federal law requires that people with disabilities have access to vote on Election Day.Federal law requires at least one accessible voting system in every in-person voting center. However, it's best to connect with your local election officials to confirm an accessible polling location in your area.If your assigned polling location is not accessible, you have the right to be reassigned to an accessible polling place or to be provided an alternative method of voting.If you encounter a barrier when you arrive, talk with a poll worker or election judge present to make accommodations.A person has the right to ask to vote curbside, in a car/vehicle if the polling place is not accessible.A person has the right to have a friend, family member, or polling staff help them to vote. The Voting Rights Act of 1964 states that any voter requiring assistance to vote because of a disability will have the ability to bring a person of their choice to assist them in casting their ballot. Though polling staff should be trained in accessible voting, that may not be reality at your polling location.A person also has the right to refuse help with voting if they don't need it.Other voting resources: For general and accurate voting information: https://vote.gov/ and https://www.healthyvoting.org/You can track your ballot on California's ballot tracker: https://california.ballottrax.net/voter/American Association of People with Disabilities; https://www.aapd.com/wp-content/uploads/2020/10/State-Voting-Guide-California.pdf (this is a thorough guide of voting resources including ones detailed below).To request remote accessible vote by mail, need to request by October 27. https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mailNational Association of the Deaf (NAD); American sign language (ASL) voting hotline: 301-818-VOTE or 301-818-8683; https://www.nad.org/asl-voter-hotline/National Federation of the Blind (NFB): they have voting information you can download in Word, braille, Word in Spanish, braille in Spanish, and a specific guide for young people, also in braille. They also have voter guide videos in English and Spanish. https://www.nfb.org/programs-services/center-excellence-nonvisual-access/national-center-nonvisual-election-3.Self advocates becoming empowered for voting and guardianship. Website includes informative videos on how to deal with potential voting problems at polling location. https://www.sabeusa.org/govoter/voting-info/voting-and-guardianship/.Autistic Self Advocacy Network (ASAN): A Self-Advocate's Guide to Voting in the U.S. https://autisticadvocacy.org/policy/toolkits/voting/California easy voter guide; https://easyvoterguide.org/Voter's Edge California: https://votersedge.org/caDisability Vote California: https://disabilityvoteca.org/Disability Rights California: for voting publications https://www.disabilityrightsca.org/resources/voting. Disability Rights California: 1831 K Street, Sacramento, CA 95811; Phone: 916-504-5800, 800-719-5798 (TTY), 800-776-5746 (Toll Free); info@disabilityrightsca.org; www.disabilityrightsca.org/Election protection hotline: 866-OUR-VOTE (866-687-8683); https://866ourvote.org/The Muscular Dystrophy Association (MDA), recently sat down with Pennsylvania Senator Bob Casey, about accessible voting and what he's doing in Congress to make voting more accessible for individuals living with disabilities. Click here to watch video: https://youtu.be/9e4w6bc5lkg . And, link for MDA‘s Advocacy Institute on accessible voting: https://strongly.mda.org/know-your-voting-rights-on-election-day-2020/.National conference on state legislators: voting info by state and how to restore voting right after a felony conviction. In 2016, California passed legislation allowing those in county jails to vote while incarcerated, but not those in state or federal prison. https://www.ncsl.org/research/elections-and-campaigns/felon-voting-rights.aspx.Attachments areaPreview YouTube video MDA Advocacy Institute Session 4: Accessible VotingMDA Advocacy Institute Session 4: Accessible VotingAt what age did your disorder become a daily issue? *29Who were you before your illness became debilitating? *I was a happy, healthy, young adult, recently moved in with my then-boyfriend, working full-time at a healthcare consulting company. Also, I had recently applied to masters public health program.(MPH) programs though was rejected from all 3 programs, where I applied. Though disappointed, I was still optimistic, and certain I'd find another way for career advancement or development.What would you do if you were not dealing with your disorder and/or disability? *Writing more, dancing, graduate school, traveling, volunteering in person, socializing a lot more with friends and family, having children (though can't anymore at age 49)... I did want to be a mother/have children.What would you like people to know about your daily life? *This is probably TMI, too much information but here's my answer:-): My daily life varies tremendously, depending on previous days activities, sleep, and the priorities to accomplish for the day. I frequently feel like a young person in an older person's body. Therefore, everyday tasks/activities often take longer for me, and utilize spoons, like taking a bath, getting dressed, putting shoes and braces on, etc. I often arrange MD or other health-related appointments, and sometimes transportation. I manage a multitude of healthcare paperwork, and receipts for medical deductions. Also, I usually stretch and do some movement each day. And like most people, I check and answer email, as well as read, research, shop and/or connect online. Though admittedly, I tend to find social media overwhelming and fatiguing, So, social media is usually my last priority. I'm definitely open to suggestions for mitigating social media fatigue. Typically, I prefer to text, email, call, FaceTime or zoom with close friends and family. Additionally, a couple of days a week I play mah-jongg with friends, and a couple of days a week I go to the local Peninsula Jewish Community Center (PJCC) for Pilates exercise or community events/activities, pre-COVID-19. I love to write, and free-write mostly for myself. I especially like writing personal essays and articles. I've written an article on caring for hands with CMT published on cmtausa.org, and CMTA's spring 2020 magazine. Despite hand challenges, I enjoy various arts and crafts. Before COVID-19, attended a few free adult arts and crafts classes/workshops. I've participated in a variety of volunteer projects over the years including, tutoring primary school-age kids, reading stories to preschoolers, participating in various consumer/market research studies and usability focus groups. I've organized and participated in many CMTA fundraising efforts, and in 2019, was a top individual fundraiser of all the annual CMTA walks across the country. Our annual SF/Bay Area September walk for CMT, usually located in Palo Alto, California, won't be taking place this year due to COVID-19. However, we will still fundraise online, and friends and family do their own walks. Last year, with the recommendation of San Mateo‘s Center For Independence and Disabled, Assistive Technology Coordinator, I worked with a local private high school for their Project Invent program. Along with other high schools across the country, each student group developed their technology device innovation for someone in the disabled community. Students interviewed and videotaped me for a couple of hours, as I told my story living with Charcot-Marie-Tooth disease. Then, I corresponded with their teacher via emails, as well as a couple Zoom calls with teacher and students. They developed a technology called Ruby, to automatically tie shoelaces through a click of the heel and/or handheld device/remote control. Because of COVID-19, students didn't have an opportunity to work with me after the prototype complete and test it. But, I saw a 3-D model they developed on the computer, during the virtual Project Invent Demo Day presentation. There were nine student teams. They had five judges from big tech companies around the country (i.e. Amazon) as well as the founder of Project Invent. Team Ruby were one of three runner up teams, winning a $500 prize to further test their product and try and bring to the marketplace. It was amazing seeing these brilliant and innovative kids! It was truly an honor to participate. Eventually, assuming we're able to be together in groups again, goal is to meet with high school student team, to test the prototype. The following link explains and shows a 3-D model of project: https://www.csus.org/news-detail?pk=1102892What would make living and moving in the world easier for you? *Packaging not so difficult to open on everyday items! I have heard you say on this podcast, that Uber and Lyft should offer reduced prices for disabled customers. I would broaden that to other company services, as well as movie theaters, live theater productions, and concerts, and sporting events. If had more energy, I'd like to aggressively advocate for increased opportunities for low-income housing, especially for young adults to middle-age, with physical disabilities, and include such offerings as rehabilitation pool, group activities, etc. One other thing is new innovations/technology for mobility...ways to be more mobile and active. Have you heard of the Alinker, https://www.thealinker.com/? It's not right for everyone, but a fabulous mobility aid developed by an engineer in the Netherlands.. It's somewhat pricey, and not covered by Medicare or most insurance plans. However, it's extremely well-made, and I'd love to have one

Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www.girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline. She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and, most recently, Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene. Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb-Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge. Topics Mentioned In This Episode Muscular Dystrophy Association Living With Muscular Dystrophy Group Born This Way Foundation Fill the Boot Podcast Guest Application Podcast Sponsorship Opportunities The Inspired Women Community Connect With Keisha: Website Instagram Facebook Twitter XoXo Megan --- Send in a voice message: https://anchor.fm/keisha-greaves/message

Keisha Greaves is the founder of fashion label Girls Chronically Rock, and is a motivational speaker and former Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Diagnosed as a graduate student with limb-girdle muscular dystrophy, she is now largely wheelchair-bound. As a patient advocate, she worked with Massachusetts Governor Charlie Baker to have September 30th officially proclaimed as Limb-Girdle Muscular Dystrophy Awareness Day in the city of Cambridge, MA. Her passion is in an adaptive fashion, and she works with Framingham State University students to teach the importance of access and practicality in their designs. She has been featured on numerous media outlets, including Good Morning America, The Today Show, ABC News, Thrive Global, and Politico. She is an active participant in many local fundraising events for the MDA and other organizations, frequently encouraging audiences to “Fill the Boot” to support research and awareness. She’s also a total inspiration, encouraging those of us living with chronic illnesses to embrace the change and move forward into our new lives with grace and enthusiasm. Tune in to get dosed with an infectious amount of joy! Key Links Key links mentioned in this episode: Girls Chronically Rock @girlschronically_rock on Instagram Muscular Dystrophy Association (MDA) Boston Business Women Takeaway Tune in as Keisha shares: that she was diagnosed with muscular dystrophy after an MRI and muscle biopsy that when she was first diagnosed, she knew nothing about her condition that she was very much in denial of her condition early on that muscular dystrophy is a progressive condition, and that her limb-girdle type also affects her heart what muscular dystrophy is that because her condition is progressive, she’s slowly deteriorated physically — beginning at first with a cane, then a walker, and now full-time in a wheelchair how much more independent she is in her wheelchair, which she adopted in 2019 how she’s decorated her wheelchair to customize her appearance how she’s connected with other Spoonies through social media the grieving process of being diagnosed with a progressive and chronic disease how she unwinds why she's still working toward accessibility equity as someone who is wheelchair-bound discrepancies in insurance coverage, from prescriptions to mobility and transportation as a disabled person what’s next in her business: a Girls Chronically Rock adaptive clothing collection her top tips for staying happy and fulfilled when living with a disability --- Send in a voice message: https://anchor.fm/keisha-greaves/message

In celebration of Labor Day, we look at a business that is empowering the chronic disease community. Kate interviews Keisha Greaves, founder of the clothing brand Girls Chronically Rock. Plus, Terry and Dr. Bob discuss a potential COVID-19 vaccine by fall and provide an update on Erica Dean’s canceled ICER speech. Guest:Keisha GreavesOwner, Girls Chronically RockKeisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock offers inspired fashion celebrating muscular dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Improper Bostonian, Boston Voyager, Herself 360, and Liz on Biz, among other outlets on and offline.She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and most recently, Girl’s Night Out for Muscular Dystrophy, a Boston-area fundraising event held by NextonScene.Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA, the most successful collaborations being with renowned designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb-Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge.Keisha earned her bachelor’s degree in fashion design and merchandising from Framingham State College, and her master’s in business management from Cambridge College. Hosts:Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.Kate Pecora, Field Correspondent Links:Girls Chronically RockKeisha GreavesOwning Personal Health Records is the Key to Medical Innovation, by Dr. Robert GoldbergPatients 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.orgHave 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.orgThe 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.

Keisha Greaves is the founder of fashion label Girls Chronically Rock, and is a motivational speaker and former Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Diagnosed as a graduate student with limb-girdle muscular dystrophy, she is now largely wheelchair-bound. As a patient advocate, she worked with Massachusetts Governor Charlie Baker to have September 30th officially proclaimed as Limb-Girdle Muscular Dystrophy Awareness Day in the city of Cambridge, MA. Her passion is in adaptive fashion, and she works with Framingham State University students to teach the importance of access and practicality in their designs. She has been featured on numerous media outlets, including Good Morning America, the Today Show, ABC News, Thrive Global, and Politico. She is an active participant in many local fundraising events for the MDA and other organizations, frequently encouraging audiences to “Fill the Boot” to support research and awareness. She’s also a total inspiration, encouraging those of us living with chronic illnesses to embrace the change and move forward into our new lives with grace and enthusiasm. Tune in to get dosed with an infectious amount of joy! Tune in as Keisha shares: that she was diagnosed with muscular dystrophy after an MRI and muscle biopsy that when she was first diagnosed, she knew nothing about her condition that she was very much in denial of her condition early on that muscular dystrophy is a progressive condition, and that her limb-girdle type also affects her heart what muscular dystrophy is that because her condition is progressive, she’s slowly deteriorated physically — beginning at first with a cane, then a walker, and now full-time in a wheelchair how much more independent she is in her wheelchair, which she adopted in 2019 how she’s decorated her wheelchair to customize her appearance how she’s connected with other Spoonies through social media the grieving process of being diagnosed with a progressive and chronic disease how she unwinds why she's still working toward accessibility equity as someone who is wheelchair-bound discrepancies in insurance coverage, from prescriptions to mobility and transportation as a disabled person what’s next in her business: a Girls Chronically Rock adaptive clothing collection her top tips for staying happy and fulfilled when living with a disability

Today Cristabelle is joined for an inspirational conversation with guest Keisha Greaves to share her journey of living with Muscular Dystrophy, what the diagnosis journey was like, and how she has pursued her dreams of starting her own clothing line called “Girls Chronically Rock”. Listen for advice and encouragement on how to move forward and pursue your dreams, awareness on Muscular Dystrophy, and more! •CONNECT & MORE INFO• Hosted by Cristabelle Braden Instagram: @declarationlife Facebook: @declarationlife Website: http://cristabellebraden.com/declarationlife Connect with Cristabelle: @cristabellebraden Intro/Outro Music: "Not Giving Up" by Cristabelle Braden •ABOUT KEISHA• Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline. One of Keisha's proudest moments is being featured In Today Style Heroes. Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha's proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge. Website: http://girlschronicallyrock.com Instagram: @girlschronically_rock Facebook: @GirlsChronicallyRock

In this episode we meet my good friend Susan Kenny. Susan has spent the last 17 years working for some amazing and productive organizations such as the Muscular Dystrophy Association (MDA), the Ronald McDonald Hose of OC and now CASA (Court Appointed Special Advocates). We discuss her journey to this rewarding line of work, the different organizations and their causes. We talk about the various ways her and the team  generate donations and resources for the cause. I know everyone who listen will take something away from this one. Hope you enjoy. You can reach Susan here: https://www.linkedin.com/in/susan-kenny-80b6988/

In this special feature episode, you'll learn about bikers doing good. Listen to Biker Life Radio with Chuck & Deb as they interview outstanding individuals that are making a difference in the community for causes they believe in and are passionate about. We encourage you to participate and lend your support to these causes. You can start by sharing this podcast with your friends & family.  Thank you! Deb interviews SnowQueen (KJ Smolarek) about the 2020 All Female Ride April 3rd - 5th in Jacksonville Florida. They had 420+ riders in 2019 and are striving for more in 2020. Ladies we want to see you there! For more information contact Lil Tigger 912-467-8050 or Mobeta 336-221-4790 - On Instagram: afr2wheels2getherjax and Facebook: https://www.facebook.com/groups/1236329743074529/ Riding For A Purpose Vision:Our goal is to build a bridge of support and an unbreakable network among women of all walks of life with hopes of creating a path that women can travel with confidence. To provide a platform where women can come together, on one accord, from state to state, providing positive education, ultimately leading to increased motivation. Chuck interviews Matt the Head Road Captain of the Manasota HOG Chapter. Matt shares information about the benefits of joining the Harley Owners Group (HOG). And the HOGS & DOGS Poker Run that the HOG Chapter & Rossiter's Harley Davidson are sponsoring to benefit Satchel's Last Resort Animal Shelter/Sanctuary a non-profit no kill animal shelter on October 20, 2019.  For more information on the Hogs & Dogs Poker Run visit www.manasotahog.com or https://satchelslastresort.org/schedule/hogs-and-dogs-poker-run/. Satchel’s Last Resort is a no-kill animal shelter/sanctuary whose mission is to Rescue, Rehab and Rehome dogs and cats with nowhere else to go because of breed, behavior or medical issues. Meet Jill from Muscular Dystrophy Association (MDA) and how they have partnered with Harley Davidson and the HOG Chapter to help raise money for MDA.  Rossiter's Harley Davidson and the Manasota HOG Chapter are sponsoring an epic Motorcycle Scavenger Hunt through Sarasota to help send kids to MDA Summer Camp. The scavenger hunt takes place on November 16, 2019. For more information contact Jill Jones at 239-437-6900 or JIJones@MDAUSA.org for more information or sponsorship opportunities and visit the www.HuntForSummer.com Biker Life Radio with Chuck & Deb along with the Manasota HOG Chapter Director Jim Wilder will be MCing the event. We'd love to meet you and encourage you to come out and support MDA. Families are at the heart of MDA's mission. We wake up every morning to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. We do this by finding research breakthroughs across diseases, caring for kids and adults from day one and empowering families with services and support in hometowns across America.Giving veterans and active military a second chance at life is what K9 Partners For Patriots is all about. In this interview you'll meet Mary Peter the Founder & Executive Director and you'll also hear from Gregg Laskoski their Communications Director. Learn how K9 Partners For Patriots helps veterans with Post Traumatic Stress Disorder (PTSD), Traumatic Brain Injury (TBI) and Military Sexual Trauma (MST) through the experience of training and caring for their own service dog. You'll be amazed about how these Service Dogs save lives, and your contribution will continue to help them do so. For more information call 352-397-5306 or visit their website at: https://k9partnersforpatriots.com To give veterans and active military a second chance at life by honoring and empowering those with Post Traumatic Stress Disorder, Traumatic Brain Injury and Military Sexual Trauma through the experience of training and caring for their own service dog. These are all very important causes and we ask that you help support one if not all. We are honored to be able to help get their message out. Are you a Biker Doing Good? If so, we want to hear about it! Subscribe and Share with your Friends. Follow us on: https://www.facebook.com/ChuckNDebShow/ https://www.youtube.com/chuckndebshow https://twitter.com/deb_chuck http://www.chuckndebshow.com/ http://www.BikerLifeRadio.com http://www.BikerLifePodcast.com Listen On 1490 AM WWPR Bradenton, Sarasota, Tampa - Every Wednesday at 4PM EST.   All Rights Reserved 2019 - Biker Life with Chuck & Deb Chuck & Deb Show™ - Biker Life Radio™ Biker Life Podcast™    #ChucknDebShow #BikerLife #Motorcycles #Podcast #FindTrueFreedom  Motorcycle Podcast  

IT’s that’s time again, yep, the Nerds are here with another fantastic episode of random pop culture news. So please ensure your seats are in the upright position and trays are folded away as we are expecting to experience turbulence. This week we are taking a look at Western Australia with Buck. Apparently NASA and the European Space Agency are spending time there in preparation for their upcoming missions to Mars. Apparently it is as close as you can get to Mars conditions without going there. Just with super spikey Spinnefex grass to poke holes in your clothes, body, and anything else you put near it. This stuff is more painful than a cactus. But the main reason why NASA and the ESA have scientist out here isn’t for an all-expenses paid holiday. No, they are here to work. What is that work, well it is the first topic so listen in.Next we hear about a bunch of dead beats who didn’t pay a kid for his hard work making an awesome game. That’s right, a gaming studio has actually shown themselves to be a bigger bunch of scumbags then a politician on the campaign trail. Apparently they only have a small number of employees though, so it was all just some misunderstanding. Wait a minute, hold on, Buck hit’s a sore point here and makes sense in regards to what the dirtbags are up to. Of course this is utterly outrageous, particularly if he is right; my goodness, if he is we’ll never hear the end of it. But if he is, oh the humanity, oh no, this is devastating. But if you want to know more of what I am rambling on about then you know what to do, that’s right, listen in.At the sound of Tinker Bell waving her magic wand please turn the page… ohh, um, wait a second, are you still here? Dang nabbit! Well in that case We have the DJ for you with a story about a new spin-off for the terminator. James Cameron has announced his plans to reboot the series and is planning to do so after he finishes the Avatar series. So it is a race to see what comes out first, the new reboot of Terminator or Star Con, um, Star Citizen… Well I think we will all be old, even the Rolling Stones won’t be touring anymore by then. Perhaps One Direction will be back together for a reunion tour…oh the humanity, the torture, please stop. On a better note check out our friends at “Off With The Fairies” another outstanding TNC podcast. After this we have the usual shout outs, remembrances, birthdays and special events. As always, stay say, look out for each other and stay hydrated.EPISODE NOTES:NASA and the Outback - https://www.abc.net.au/news/2019-09-01/nasa-in-western-australia-looking-for-clues-to-mars-mission/11452250Chucklefish no pay - https://www.gamerevolution.com/news/588619-starbound-dev-allegedly-worked-hundreds-hours-no-payTerminator trilogy - https://deadline.com/2019/08/terminator-dark-fate-james-cameron-on-re-wired-franchise-possible-new-trilogy-1202707063/Games currently playingBuck– Albion online - https://store.steampowered.com/app/761890/Albion_Online/Professor– Dicey Dungeons - https://store.steampowered.com/app/861540/Dicey_Dungeons/DJ- Dungeons and Dragons - https://dnd.wizards.com/Other topics discussedPilbara (large, dry, thinly populated region in the north of Western Australia. It is known for its Aboriginal peoples; its ancient landscapes; the red earth; its vast mineral deposits, in particular iron ore; and as a global biodiversity hotspot for subterranean fauna.)- https://en.wikipedia.org/wiki/PilbaraSkylab crash into Australia- https://www.thebigsmoke.com.au/2018/05/28/the-small-town-middle-universe-skylab-crashed-australia/Snake on a coffee machine- https://au.news.yahoo.com/brisbane-uni-student-finds-snake-on-coffee-machine-053316494.htmlSilurian (a race of reptilian humanoids in the long-running Britishscience fiction television series Doctor Who.)- https://en.wikipedia.org/wiki/Silurian_(Doctor_Who)Snakes on a Plane (2006 American actionthriller film starring Samuel L. Jackson)- https://en.wikipedia.org/wiki/Snakes_on_a_PlaneSpinifex (plant)- https://en.wikipedia.org/wiki/Spinifex_(plant)MARS Rover Lander Structure- https://mars.nasa.gov/mer/mission/spacecraft/entry-descent-and-landing-configuration/lander-structure/MARS Rovers and their specifications- Rover - https://mars.nasa.gov/mer/mission/rover/- Curiosity - https://en.wikipedia.org/wiki/Curiosity_(rover)Riot Games Lawsuits- Sex Discrimination lawsuit – https://www.engadget.com/2019/08/23/riot-games-settles-class-action/- Pay dispute lawsuit - https://variety.com/2019/gaming/news/riot-games-under-investigation-over-pay-discrimination-1203242044/Telltale games having crunch culture as a necessary evil- https://www.pcgamer.com/au/telltale-co-founder-crunch-was-necessary-to-keep-studio-afloat/Game Workers Unite- https://www.gameworkersunite.org/Defiant Development, game studio famous for Hand of Fate games shuts down- https://www.gamesindustry.biz/articles/2019-07-24-defiant-development-to-close-after-nine-yearsAvatar 2 (upcoming sci-fi film)- https://en.wikipedia.org/wiki/Avatar_2Star Citizen Squadron 42 (Game)- https://starcitizen.tools/Squadron_42Tim Miller (Movie Director famous for Deadpool, Terminator Dark Fate & Sonic Movie)- https://en.wikipedia.org/wiki/Tim_Miller_(director)Movie to TV series- Lethal Weapon (2016 TV series) - https://en.wikipedia.org/wiki/Lethal_Weapon_(TV_series)- Shooter (2016 TV series) - https://en.wikipedia.org/wiki/Shooter_(TV_series)The Orville (2017 science fiction comedy-drama television series created by and starring Seth MacFarlane)- https://en.wikipedia.org/wiki/The_OrvilleLand of the Giants (1968 science fiction television series)- https://en.wikipedia.org/wiki/Land_of_the_GiantsTwilight Zone accident- https://en.wikipedia.org/wiki/Twilight_Zone_accidentDr Who (1963 Sci Fi TV series)- https://en.wikipedia.org/wiki/Doctor_WhoHow the Tardis sound effect was made- http://www.themindrobber.co.uk/tardis-sound-effects-materialisation.htmlWilliam Hartnell (First Doctor in Dr Who)- https://en.wikipedia.org/wiki/William_HartnellRegeneration (biological ability exhibited by the Time Lords in Dr Who)- https://en.wikipedia.org/wiki/Regeneration_(Doctor_Who)D100 dice- http://940ee6dce6677fa01d25-0f55c9129972ac85d6b1f4e703468e6b.r99.cf2.rackcdn.com/products/pictures/795485.jpgPierre de Coubertin medal (also known as the De Coubertin medal or the True Spirit of Sportsmanship medal)- https://en.wikipedia.org/wiki/Pierre_de_Coubertin_medalJesse Owens (American track and field athlete and four-time gold medalist in the 1936 Olympic Games)- https://en.wikipedia.org/wiki/Jesse_OwensRecent Pierre de Coubertin medal winner : Han Meilin - Chinese artist most recognized today for his creation of the Fuwa dolls for the 2008 Summer Olympics in Beijing.- https://en.wikipedia.org/wiki/Han_MeilinBloodhound Gang – Why’s Everybody Pickin’ On Me- https://www.youtube.com/watch?v=EaGKxAgCguUOff with The Fairies (TNC Podcast)- https://thatsnotcanon.com/offwiththefairiespodcastShoutouts1 Sept 1902 - A Trip to the Moon, considered one of the first science fiction films, was released in France on this day in 1902. The brainchild of French film pioneer Georges Méliès, the silent black-and-white film tells the story of an astronomer’s dream: a group of men travel to the moon by way of a giant cannon. - https://www.historychannel.com.au/this-day-in-history/worlds-first-science-fiction-film-released/2 Sept 1752 – Great Britain, along with its overseas colonies, adopts the Gregorian calendar. - https://en.wikipedia.org/wiki/Adoption_of_the_Gregorian_calendar#Great_Britain_and_its_colonies2 Sept 2019 - Max Sylvestermade a dramatic emergency landing when his instructor passed out mid-flight says his studies saved his life. It was Mr Sylvester's first lesson in the two-seater Cessna and his third lesson overall, and his wife and three young children were watching from the ground. - https://www.abc.net.au/news/2019-09-02/emergency-plane-landing-pilot-credits-study-for-saving-him/114711404 Sept 2019 – 13 years since Steve Irwin died, Irwin's children, 21-year-old Bindi and 15-year-old Robert both work with their mother at Australia Zoo, continuing the effort's their father dedicated his life to. -https://www.abcactionnews.com/news/world/steve-irwin-remembered-by-family-on-13th-anniversary-of-deathRemembrances2 Sept 1973 – J.R.R Tolkien, English writer, poet, philologist, and academic, who is best known as the author of the classic high fantasy works The Hobbit,The Lord of the Rings, and The Silmarillion. While many other authors had published works of fantasy before Tolkien, the great success of The Hobbit and The Lord of the Rings led directly to a popular resurgence of the genre. This has caused Tolkien to be popularly identified as the "father" of modern fantasy literature—or, more precisely, of high fantasy. In 2008, The Times ranked him sixth on a list of "The 50 greatest British writers since 1945". Forbes ranked him the fifth top-earning "dead celebrity" in 2009. He died from a bleeding ulcer and a chest infection at the age of 81 in Bournemouth - https://en.wikipedia.org/wiki/J._R._R._Tolkien2 Sept 2005 - Bob Denver, American comedic actor, widely known for portraying Gilligan on the 1964-1967 television series Gilligan's Island and beatnikMaynard G. Krebs on the 1959–1963 series The Many Loves of Dobie Gillis. He died from pneumonia at the age of 70 in Winston-Salem, North Carolina - https://en.wikipedia.org/wiki/Bob_Denver2 Sept 1937 - Pierre De Coubertin, French educator and historian, founder of the International Olympic Committee, and its second President. He is known as the father of the modern Olympic Games. The Pierre de Coubertin medal (also known as the Coubertin medal or the True Spirit of Sportsmanship medal) is an award given by the International Olympic Committee to athletes who demonstrate the spirit of sportsmanship in the Olympic Games. He died from a heart attack at the age of 74 in Geneva - https://en.wikipedia.org/wiki/Pierre_de_CoubertinFamous Birthdays2 Sept 1877 - Frederick Soddy, Englishradiochemist who explained, with Ernest Rutherford, that radioactivity is due to the transmutation of elements, now known to involve nuclear reactions. He also proved the existence of isotopes of certain radioactive elements. His work and essays popularising the new understanding of radioactivity was the main inspiration for H. G. Wells'sThe World Set Free, which features atomic bombs dropped from biplanes in a war set many years in the future. Wells's novel is also known as The Last War and imagines a peaceful world emerging from the chaos. In Wealth, Virtual Wealth and Debt Soddy praises Wells’s The World Set Free. He also says that radioactive processes probably power the stars. He was born in Eastbourne,Sussex - https://en.wikipedia.org/wiki/Frederick_Soddy2 Sept 1936 - Andrew Grove, Hungarian-born American businessman, engineer, author and a pioneer in the semiconductor industry. He escaped from Communist-controlled Hungary at the age of 20 and moved to the United States where he finished his education. He was one of the founders and the CEO of Intel, helping transform the company into the world's largest manufacturer of semiconductors. As a result of his work at Intel, along with his books and professional articles, Grove had a considerable influence on electronics manufacturing industries worldwide. He has been called the "guy who drove the growth phase" of Silicon Valley. In 1997, Time magazine chose him as "Man of the Year", for being "the person most responsible for the amazing growth in the power and the innovative potential of microchips." He was born in Budapest - https://en.wikipedia.org/wiki/Andrew_Grove2 Sept 1966 - Salma Hayek, Mexican and American film actress and producer. She began her career in Mexico starring in the telenovelaTeresa and starred in the film El Callejón de los Milagros (Miracle Alley) for which she was nominated for an Ariel Award. In 1991, Hayek moved to Hollywood and came to prominence with roles in films such as Desperado, From Dusk till Dawn, Wild Wild West, and Dogma. Her breakthrough role was in the 2002 film Frida, as Mexican painter Frida Kahlo, for which she was nominated for Best Actress for the Academy Award, BAFTA Award, Golden Globe Award, and Screen Actors Guild Award. This movie received widespread attention and was a critical and commercial success. Hayek's recent films include Grown Ups, Puss in Boots, Grown Ups 2,Tale of Tales and The Hitman's Bodyguard. She was born in Coatzacoalcos,Veracruz - https://en.wikipedia.org/wiki/Salma_HayekEvents of interest2 Sept 1807 – The British Royal Navy bombards Copenhagen with fire bombs and phosphorus rockets to prevent Denmark from surrendering its fleet to Napoleon. - https://www.onthisday.com/events/date/18072 Sept 1946 – The Interim Government of India is formed, headed by Jawaharlal Nehru as Vice President with the powers of a Prime Minister. This government was entrusted the task of helping the transition of India and Pakistan from British rule to Independence as two separate nations. The Interim Government was in place till 15th August 1947, when the nations of Indian and Pakistan received Independence from colonial rule. - https://en.wikipedia.org/wiki/Interim_Government_of_India2 Sept 1901 – Vice President of the United States Theodore Roosevelt utters the famous phrase, "Speak softly and carry a big stick" at the Minnesota State Fair. Roosevelt described his style of foreign policy as "the exercise of intelligent forethought and of decisive action sufficiently far in advance of any likely crisis." - https://en.wikipedia.org/wiki/1901_in_the_United_States#July%E2%80%93September4 Sept 1966 - The Jerry Lewis MDA Labor Day Telethon was first aired to raise money for the Muscular Dystrophy Association (MDA). The Muscular Dystrophy Association was founded in 1950 with hopes of gaining the American public's interest. The show was hosted by comedian, actor, singer and filmmaker Jerry Lewis from its 1966 inception until 2010. The telethon would raise $2.45 billion for MDA from its inception through 2009. - https://en.wikipedia.org/wiki/The_Jerry_Lewis_MDA_Labor_Day_TelethonIntroArtist – Goblins from MarsSong Title – Super Mario - Overworld Theme (GFM Trap Remix)Song Link - https://www.youtube.com/watch?v=-GNMe6kF0j0&index=4&list=PLHmTsVREU3Ar1AJWkimkl6Pux3R5PB-QJFollow us onFacebook - https://www.facebook.com/NerdsAmalgamated/Twitter - https://twitter.com/NAmalgamatedSpotify - https://open.spotify.com/show/6Nux69rftdBeeEXwD8GXrSiTunes - https://itunes.apple.com/au/podcast/top-shelf-nerds/id1347661094RSS - http://www.thatsnotcanonproductions.com/topshelfnerdspodcast?format=rssGeneral EnquiriesEmail - Nerds.Amalgamated@gmail.com

Golf/hockey outing in Memory of our son Andrew. We are now working to support MDA by generating research funds to find a cure for our oldest son Nick.In 2001, we had a son named Andrew that passed away after 25 days of in the hospital from unknown causes. Several years later, Andrew's older brother Nicholas was diagnosed with Myotonic Muscular Dystrophy (MMD). Through genetic testing, it was discovered that MMD was the cause of Andrew's death. We are now working to support the Muscular Dystrophy Association (MDA) by generating research funds to find a cure for Nicholas, and the many other individuals in the Toledo area that are affected by one of the 43 neuromuscular diseases (including ALS).

President and CEO of the Muscular Dystrophy Association (MDA), Lynn O’Connor Vos, discusses highlights from the Clinical and Scientific Conference, “Progress in Motion” April 2019. Visit www.hpr.fm to listen to more interviews about healthcare and research findings.

President and CEO of the Muscular Dystrophy Association (MDA), Lynn O’Connor Vos, discusses the work that the organization is doing to fund research for neuromuscular diseases. MDA is the largest source of funding for neuromuscular disease research outside the federal government and has committed more than $1 billion in funding since its inception. Visit www.hpr.fm to listen to more interviews about healthcare and research findings.

Dwight W. Holcomb is a Member of the Forbes Business Council and the host of the business television show, "SaaS CEO Success TV".  The show is set to air on the C-Suite TV Network which has global distribution in over 59 million households and more than 90 million views per month. Dwight is the CEO of HC Development, providing MaaS CMO™ , Marketing as a Service with Executive oversight to the Software & Technology industry.  Dwight speaks Internationally as a Technology Futurist and on the topic of Sales & Marketing Innovation.  The Author of "The Lean CMO" and a serial entrepreneur, Dwight launched several start-up companies in very diverse industries.  He is the founding CEO of LifePet Organic, iBuyBaby.com and Millennium Entertainment, earning executive producing credit and pilot work with Robert Downey, Jr., Jon Lovitz and Russell Peters.  Committed to helping other executives to excel in business, Dwight sits on the Board of several privately held companies and is a founding member of the UCLA Anderson CEO Forum.  Earning an MBA from both UCLA Anderson School of Management and The National University of Singapore Business School, Dwight is a graduate of the UCLA-NUS Global Executive MBA program, ranked #3 in the world by the Economist.  He currently serves as President for the UCLA Anderson Alumni Network Board of Directors and is an Executive Committee Board Member for the Muscular Dystrophy Association (MDA).  Dwight earned a degree in Computer Information Systems from Arizona State University while competing on ASU’s nationally ranked wrestling team under U.S. Olympic Coach, Bobby Douglass.  Dwight has over 20 years of global business & executive management experience, working with start-ups to Fortune 100 companies, such as Microsoft and AT&T. Dwight is an avid wakeboarder & snow skier and enjoys traveling with his wife and two children.

The Andrew Gulch Memorial Golf Outing to Benefit the Muscular Dystrophy Association (MDA) is a tribute to our angel, Andrew. On December 31, 2001, Andrew was born and struggled to live…25 days later he passed away from unknown causes. Several years later, Andrew’s mother and older brother Nicholas were diagnosed with Myotonic Muscular Dystrophy (MMD). Feeling an immediate need to do something, the Golf Outing was designed with two goals: 1) to raise money to find a cure for Muscular Dystrophy and 2) to allow Andrew’s name to live on and be celebrated throughout the year!

Suzanne Stoltz Suzanne Stoltz, a many-year participant at a MDA camp, charts the political underbelly of the disability summer camp experience. Summer camp for kids is usually perceived as a fun time where participants socialize, play, run, and swim. This includes summer camps dedicated to serving kids with the same or similar disabilities, like those sponsored by the Muscular Dystrophy Association (MDA).  But, there is more going on than camp songs and meal time hi jinks.  We look at the ways disability summer camps both support and dis-empower kids with disabilities. Suzanne Stolz, Ed.D. serves as the Academic Coordinator of the Online M.Ed. and as faculty for the program's Universal Design for Learning and Inclusive Education specialization, University of San Diego. Suzanne contributed an article about her experiences in an essay which appeared in Disability Politics in a Global Economy; Essays in Honor of Marta Russell, edited by Ravi Malhotra. Her essay was called “Disability Community, Policy, Care and Empowerment: ‘Growing Up' at MDA Camp and the Shaky Social Contract.” Produced and hosted by Eddie Ytuarte. The post Summer Camps for People with Disabilities appeared first on KPFA.

When her 5-year old son was first diagnosed with a life-altering disease, the first question Star Bobatoon asked was, “Why me?” Several years later she discovered the answer: so she could - from a place of experience and compassion - support, empower, and inspire other parents who have children with special needs. Star Bobatoon is an accomplished attorney, dynamic trainer, and award-winning speaker whose high energy and engaging style make a lasting impact on her audiences and clients. With over a decade of performance on stage, television, and the big screen, Star colors her timely and relevant messages with drama and humor. Using her legal background, Star goes beyond inspiration to convey concrete ideas and practical tools that allow audiences to make real changes in their lives.  She  encourages her audiences and clients to embrace their inner light and become the STARs they were born to be. Star is especially committed to organizations that support parents with special kids. She is a volunteer, speaker, and workshop leader for informal support groups and national organizations including Parent Project Muscular Dystrophy (PPMD), Muscular Dystrophy Association (MDA), and the Make-A-Wish Foundation. Her greatest accomplishment is being the proud parent of "two of the most beautiful children in the history of children.” Her youngest is her daughter Xanthia, and her eldest is her son Hurricane. Hurricane has Duchenne Muscular Dystrophy and is the inspiration for her book, I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Disease.

PHOTO EDITORS AND BROADCAST NEWS EDITORS NOTE: This release contains links to digital photos from the event for your use. It also contains a link to an audio wrapper report on the event. The wrapper report is 1:21 in length with a standard outcue, and contains interviews with Melanie Morgan of MDA, and Leon Schneider, market grocery manager for Wal-Mart. CONTACT: Kaitlyn Sweeney 973.992-7800 x.277 Wal-Mart Helps Raise $20,000 through Partnership with Muscular Dystrophy Association “Bowl for a Cure Challenge” fund-raiser and store grants each contribute to grand total STRATFORD, NJ (June 8, 2008) – Ten hours of non-stop bowling means more funding for the Muscular Dystrophy Association (MDA) and ever-lasting pride for Wal-Mart associates. Wal-Mart's Market 279 – of Southern New Jersey – recently teamed with the MDA to host “Bowl for a Cure Challenge,” at La Martinque Lanes in Stratford, where market team members bowled for 10 straight hours to earn pledges from corporate sponsors. Stores within the market contributed $10,000 from their community grant funds to the MDA, while sponsors of the event matched the donation – pledging $1,000 for each hour associates bowled – bringing the grand total to $20,000. Photos from the event are available for use by the news media at this link.   “We're very grateful to Wal-Mart for their continued generosity and tireless efforts in making this event a success,” said Melanie Morgan, program director for the Muscular Dystrophy Association. “Through partnerships like these, the MDA is able to continue to provide hope and solutions to the countless Americans afflicted with these diseases.” The Muscular Dystrophy Association is a voluntary group of dedicated scientists and concerned citizens aimed at defeating the neuromuscular diseases that affect more than one million Americans through research programs, medical and community services, and public health education. The MDA supports more research for neuromuscular diseases than any other private-sector organization in the world. “The stores within our market took great pleasure in helping the MDA get that much closer to achieving its goals,” said Leon Schneider, MGM of Wal-Mart's Market 279. “The Bowl-A-Thon was a perfect way for Wal-Mart's associates to lend a hand to those in need, while having a fun-filled day with their co-workers, families and friends.” About Wal-Mart Stores Inc. Every week, millions of customers visit Wal-Mart Stores, Supercenters, Neighborhood Markets, and Sam's Club locations across America or log on to its online store at www.walmart.com. The company and its Foundation are committed to a philosophy of giving back locally. Wal-Mart (NYSE: WMT) is proud to support the causes that are important to customers and associates right in their own neighborhoods, and last year gave more than $296 million to local communities in the United States. More information about Wal-Mart can be found by visiting www.walmartstores.com. Online merchandise sales are available at www.walmart.com. About The Muscular Dystrophy Association The Muscular Dystrophy Association is a voluntary health agency – a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education. MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. The Association's comprehensive service program includes medical examinations, flu shots, support groups, MDA summer camps for youngsters and assistance with purchase of wheelchairs and leg braces. For more information on the Muscular Dystrophy Association visit www.mda.org. - # # # -