Two Disabled Dudes - Living with Urgency Kyle Bryant, Sean Baumstark

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

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

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

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

This episode delves into the journey of Skyclarys, the first FDA-approved treatment for Friedreich's ataxia (FA), a rare genetic disorder. The discussion features Dr. Colin Meyer, former executive at Reata Pharmaceuticals,  who shares his experiences from the inception of Reata to the acquisition by Biogen.
The conversation offers a compelling narrative of resilience, innovation, and collaboration in the pursuit of groundbreaking therapies for rare diseases. Colin's reflections provide valuable perspectives on the challenges and rewards of drug development, as well as the transformative potential of scientific breakthroughs in improving patient outcomes.
Also in this episode:
Sean visits Golden 1 Arena Newsworthy: Athlete With Cerebral Palsy Finishes The Barcelona Marathon Thank you notes: Kyle's friends Blake & Dan and Sean's friend Taylor  Links and resources:
rideATAXIA Hometown San Luis Obispo, CA. May 11, 2024 Nic Novicki's 2DD Episode Colin's previous episode: 035 - Drug Development - LIVE at REATA Pharmaceuticals Team FARA Himalayas Fundraising page Alex Roca finishing Barcelona Marathon Newsworthy music courtesy of Zapsplat.com

In this insightful interview with Jen Farmer, CEO of the Friedreich's Ataxia Research Alliance (FARA), we explore the evolving landscape of rare disease research and the journey towards treatments for Friedreich's ataxia (FA). Jen shares her experiences and challenges as a leader in the field, emphasizing the importance of community involvement and collaboration.
Also in this episode:
Sean travels to Vegas with a group of 30. Newsworthy: Viral ad challenges stereotypes about Down syndrome: ‘Assume I can drink a margarita’ Thank you notes: Jakob in Austria and Kelly at The Venetian. Links and resources:
Jen's Previous episodes: DD pt4: Why Sean Baumstark is Banned From Clinical Trials How a Mom Launched the First Drug Approval in FA Newsworthy music courtesy of Zapsplat.com