Two Disabled Dudes

Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation.

"I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains"

Tracy Dixon-Salazar

Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability.

The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awarenesss, and family support.

This Episode is brought to you in part by Horizon Therapeutics.

In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

There are so many things in life that are out of our control but our reaction to them is always in our control.

At the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA.

Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms.  The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem.  Many times this means starting a nonprotit organization to advance science toward a treatment and cure.  Patients, parents and friends run these organizations with little to no budget or training.  These heroic efforts make slow progress while testing the resolve of their leaders who are constantly operating at the edge of their emotional, and physical capacity.

The CZI Rare as One Program provides funding and training to build or expand research networks as well as increase organizational infrastructure to support this important work.

The program started in 2019 and this was the first in person meeting of the 50 grantee organizations that make up the Rare as One Network.  It was an emotional time as the grantees continued to learn and laugh together in 3D instead of through a screen.

We had the opportunity to moderate the closing session to talk about the incredible progress to date and the future of the program with three leaders of Rare as One, 

• Vice President, Science in Society at CZI, Tania Simoncelli
• Rare as One Program Manager, Heidi Bjornson-Pennell
• Rare as One Program Associate, Andra Stratton

Enjoy the conversation.

Is Kyle's dad trying to kill him?

A new season, a new segment: Guess What?

Plus:

Living with a disability can be isolating.  Especially among able bodied friends.  However like most things in life it's about how we react.  Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the group.

Sound from zapsplat.com.

Kyle just finished a crazy cycling adventure in the backwoods of Montana and Idaho.  12 days in, Kyle called Sean with some insights from the journey which we can all apply to our lives every day.  Sean's analysis may hit home with you.

The Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, and even this podcast. With the start of Season 8, this episode features a conversation between Kyle & Sean catching up on the busy summer they've had.

The Dudes mention a few things they'd love for you to check out:

For rideATAXIA events and impact, visit www.rideataxia.org

For team de:terminence, visit www.determinence.com

To follow Kyle's blog and GPS of his current adventure, "Ride Wild," visit: www.KyleABryant.com

Update on Google's speech recognition app for people with speech impairments.

Plus, a discussion about how acknowledgement of the progression of disease affects planning in life.  Once again, talking about the tough stuff may help us along in our journey with any health challenge.

Living beyond circumstancemeand finding ways to thrive with whatever hand you're dealt.  In this episode we hear from 4 young men who are thriving in their lives with Duchenne Muscular Dystrophy.

Jett Foundation put together this panel as their community joined in the recognition of Rare Disease Day on the last day in February.

The mission at Jett Foundation is to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders.

Jett Foundation partners with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating the development of life-changing treatments.

Heidi Behr is a Licensed Clinical Social Worker (LCSW) and she joins us to talk about how Ted Lasso Portrays mental health and therapy.