Our friends at Jett Foundation invited us into their community once again for a conversation with 5 panelists on Rare Disease Day.  We were honored to moderate the discussion with these friends:  Race Martinez - Architecture Student, living with Duchenne Kris Napper - Graphic Designer/Illustrator, Business Owner, living with SMA Chris Schlechty - Software Engineer, Jett Foundation Board of Directors, living with Limb-girdle Colin Werth - IT Specialist, International Traveler, living with Duchenne Amanda Becker - Mom to individual living with Duchenne  The conversation covered topics such as adaptive driving, college transitions, building a career, volunteering to enrich the community, and entrepreneurship.  All of this helped highlight the strength and determination within the rare disease community. We hope you are as encouraged by this conversation as we are. Links and Resources:  Jett Foundation Camp Promise 

250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad.  You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.

Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA).  FA affects their balance and coordination, significantly limiting their physical abilities.  However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM).  Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.

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This episode (254) features an interview with John Crowley, who shares his journey into the rare disease space. John's involvement started in 1998 when his daughter Megan was diagnosed with Pompe disease, a rare form of muscular dystrophy. Determined to find a cure, John and his family embarked on a journey of research and entrepreneurship, ultimately founding a biotech company that developed a life-saving enzyme therapy for Pompe disease. Despite initial challenges, including financial struggles and personal sacrifices, John's perseverance led to successful treatments for Megan and other patients. Today, Megan and her brother Patrick are thriving adults, actively contributing to society despite their condition. John's commitment to patient-centered care extends beyond his personal journey. As CEO of Amicus Therapeutics and now as CEO of BIO, he continues to advocate for rare disease patients, emphasizing the importance of universal access to treatment and addressing barriers to healthcare. Throughout the interview, John's resilience and optimism shine through, serving as an inspiration for others facing similar challenges. His dedication to making a difference in the lives of patients and his unwavering determination highlight the transformative power of hope and perseverance in the face of adversity. Also in this episode:  Sean plans to burn the clothes he wears on the climb up the world's highest road Rare Resilience: Kelly Barendt Thank you notes: Bio News and the FARA Staff  Links and resources:  John's previous episode:  144 - DD pt2: Do good and...with John Crowley   BIO Make a Wish Foundation Visit our segment partner: #RAREis 

254 - From Dad to Advocate to CEO: John Crowley's Continued Commitment

Rob Long shares his journey with Uplifting Athletes, an organization dedicated to leveraging the influence of athletes to support those impacted by rare diseases. Rob and Brett Brackett took over leadership in 2018, revitalizing the organization's mission. They have several powerful initiatives including The Young Investigator Draft, Lift for Life, Leadership Development, and Uplifting Experiences. Rob reflects on the organization's impact, sharing a touching story of how a seed grant recipient's research saved his life. This personal connection underscores the profound ripple effect of Uplifting Athletes' work. Also in this episode:  Rare Resilience: Jose Flores, Motivational Speaker Thank you notes: John the mailman and the Masterclass app  Links and resources:  Rob's previous episode:  070   Episode with Rob's Rare Resilience segment Jose Flores social media:  Instagram Facebook LinkedIn   Visit our segment partner: #RAREis 

253 - Uplifting Athletes: Harnessing the Power of Sport for Rare Diseases

In episode 252, Rob Long, executive director of Uplifting Athletes, revisits his rare disease journey. He recounts his college football days at Syracuse University and the abrupt onset of symptoms during his senior year. Rob shares the initial confusion and fear surrounding his diagnosis of a brain tumor, leading to surgery and a challenging recovery process. He reflects on the emotional toll of accepting his diagnosis and navigating through post-traumatic stress disorder (PTSD) in the years following. Also in this episode:  Kyle and Sean chat about squishy PB & J Rare Resilience: Nathan Peck, CEO of Cure VCP Disease  Links and resources:  Route map for the Dude's ride in India Rob's previous full episode Episode with Rob's Rare Resilience segment Visit our segment partner: #RAREis 

252 - NFL Plans Crushed, His Response Changes Lives

In episode 251 we welcome our dear friend Linda Snyder! Linda shares her personal journey living with a rare genetic type of ataxia and discusses how she discovered the benefits of having a mobility service dog named Cedric. She talks about the rigorous process of applying for a service dog, the extensive training Cedric underwent, and the various tasks he assists her with, including laundry! Additionally, Linda shares her involvement in the rare disease community, particularly her role in co-founding the Nebraska Ataxia (Now called Ataxia Connection), a support group that has grown significantly over the years. She discusses the impact of connecting with others who share similar experiences and the importance of supporting one another. Also in this episode:  Kyle cheats Target out of 15 cents Rare Resilience: Rob Long, Executive Director of Uplifting Athletes Thank you notes: Starbucks baristas & Pat O'Connel  Links and resources:  Canine Partners for Life Visit our segment partner: #RAREis 

250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation

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