The Dudes recently had the privilege to host a virtual panel for Jett Foundation's celebration of World Duchenne Awareness Day 2023.  This panel includes Patients, Caregivers, and Medical Professionals.  Some of the topics discussed include:   Understanding Manifesting Carriers   Common Misconceptions About Female Carriers   Challenges of Transitioning from Pediatric to Adult Care   Geographic Challenges and Access to Care   The Role of Virtual Visits   Tips for Navigating Healthcare Challenges   We are continuously impressed with the DMD Community's drive to help each other navigate challenging situations.  Thank you, Jett Foundation, for allowing us to be part of this conversation. Links & Resources  Find out More: Jett Foundation   

234 - World Duchenne Awareness Day - 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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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 

251 - From Canes to Canines: Linda's Path to Mobility

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

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 

234 - World Duchenne Awareness Day - Jett Foundation

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