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