Two Disabled Dudes

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

In this episode, Sean and Kyle discuss the importance of maintaining discipline and focus, particularly in the face of distractions and competing priorities.

The conversation delves into the concept of knowing what one wants and being clear about goals to stay motivated and driven. They reflect on the significance of surrounding oneself with supportive people who encourage and uplift in the pursuit of those goals.

Also in this episode:

• Kyle exercises a principle he learned in a past 2DD episode
• Newsworthy - International Day for Social Inclusion & Official Release of the Overjoyed Accessible Controller on the Microsoft Store!
• Thank you notes: Kyle's bike mechanic and the Vertiball massager

Links and resources:

• Download the Overjoyed accessible gaming software
• Newsworthy music courtesy of Zapsplat.com

In this episode, we discuss the groundbreaking work of Roll Mobility, a platform revolutionizing accessibility for people with disabilities. Roll Mobility functions as a Yelp-like app, providing users with vital information on the accessibility of restaurants, destinations, and sightseeing locations. By ranking establishments based on their accessibility features, Roll Mobility empowers individuals to plan ahead and ensure a smooth experience without unexpected barriers.

Our guests, and Roll Co-Founders, Rachel Zoller & Joe Foster, delve into the personal connections driving Roll Mobility's mission, highlighting the challenges faced by individuals with disabilities in navigating public spaces. Rachel emphasizes the importance of community-driven data in shaping the app's functionality.

The conversation also delves into the broader societal implications of accessibility, emphasizing the benefits that inclusive design offers everyone. By advocating for accessibility, Roll Mobility aims to foster social awareness and create a more inclusive society.

Listeners are encouraged to support Roll Mobility by downloading the app, sharing it with others, and contributing reviews to help expand its reach. Additionally, if you’re in the Denver area, we encourage you to consider attending an event hosted by Roll Mobility and Dateability, inviting Denver residents to join the Denver Pub Crawl Spring Fling April 27, 2024 to celebrate inclusion and accessibility in their community.

Also in this episode:

• The airline snapped the arm off Kyle's wheelchair
• Newsworthy - Secretary Buttigieg Announces Proposed Rule to Ensure Passengers Who Use Wheelchairs Can Fly with Dignity
• Thank you notes: Michelle and her glass art, and Dawn the personable travel agent from Altour

Links and resources:

• RollMobility Instagram
• Denver Spring Fling Pub Crawl hosted by Roll and Dateability - April 27
• Sign open letter to improve accessibility on Airlines (GlobalGenes)
• Newsworthy music courtesy of Zapsplat.com

The Dudes talk about life changes and the significance of pursuing growth and opportunities, even in the face of uncertainty. Reflecting on personal anecdotes and advice, they underscore the value of acceptance, adaptation, and gratitude in embracing life's journey.

Also in his episode:

• Kyle's most recent challenging experience with airline travel
• Newsworthy - 'Go On, Be Brave' documentary captures perseverance in face of ALS
• Thank you notes: Kyle's driving instructor and Sean's friend in Miami

Links and resources:

• Watch 'Go On, Be Brave' documentary
• The clip Sean mentioned: Making a hard decision? WATCH THIS | Dr. Ellen Langer
• Newsworthy music courtesy of Zapsplat.com

In Episode 244, the Dudes delve into the topic of change and consistency, particularly in the context of living with progressive diseases like Friedreich's ataxia (FA). They discuss the challenges of navigating constant change, setting expectations, and managing the desire for both fast and slow change.

Also in this episode:

• Emergency haircuts and curbcut confusion
• Newsworthy: FOX 5 Las Vegas Surprise Squad
• Thank you notes: A vacation buddy and fake plants

Links and resources:

• Sean's column: The progressive nature of FA taught me to appreciate gradual change
• Newsworthy music courtesy of Zapsplat.com

In this episode, Dr. David Fajgenbaum shares his journey of discovering a drug that saved his own life. He emphasizes the importance of repurposing existing drugs for new uses and highlights the potential of artificial intelligence in identifying such opportunities.

Dr. Fajgenbaum discusses his nonprofit organization, EveryCure, which aims to unlock new uses for existing FDA-approved drugs. The organization utilizes biomedical knowledge and AI algorithms to analyze connections between drugs, genes, proteins, pathways, and diseases. The goal is to find potential treatments for various diseases by evaluating existing drugs.

VIEW THIS INTERVIEW ON YOUTUBE

Also in this episode:

• Sean abandons his principles
• Newsworthy: Here's what the starbucks of the future looks like. Starbucks has opened its first cafe designed to give customers with disabilities a more accessible store experience.
• Thank you notes: Make a Hole Stranger and Gas Station Jeep Guy

Links and Resources:

• EveryCure
• EveryCure Announces Arpa-H Funding at the White House!
• Castleman Disease Collaborative Network (CDCN)
• Chasing My Cure
• 2DD Ep. 019 - Dr. David Fajgenbaum, Conquering Castleman Disease
• 2DD Ep. 091 - Chasing our Cure with Dr. David Fajgenbaum
• 2DD Ep. 092 - Why Humor is Important with Dr. David Fajgenbaum
• Newsworthy music courtesy of Zapsplat.com

Dave (Dr. Lynch), a seasoned clinician and researcher specializing in Friedreich's ataxia (FA), sheds light on his nearly three-decade journey at the forefront of FA care. Throughout the conversation, Dave emphasizes the indispensable role of patient participation in research, underscoring the collaborative spirit driving advancements in FA drug development.

Also in this episode:

• Sean's Sleep-talking escapades.
• Kyle Finally took his road test for his driver's license.
• Newsworthy: Light Up For Rare comes to a monument near you!

Links and Resources:

• Light Up For Rare
• Newsworthy music courtesy of Zapsplat.com