Two Disabled Dudes

192 - Life's Short, Live With Intention

12 Sep 2022

Contributed by Lukas

In this week's round of Guess What, both dudes came out winners.  Kyle won because Sean gave it away.  Sean won on a technicality.   Then, Kyle in...

191 - A Mother Who Never Stops

05 Sep 2022

Contributed by Lukas

Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation. "I don't think we should be writing ...

190 - Our Reactions Determine Our Outcomes

29 Aug 2022

Contributed by Lukas

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

189 - LIVE at Chan Zuckerberg Initiative Rare As One

22 Aug 2022

Contributed by Lukas

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 th...

188 - Dealing With Disability Among Friends

15 Aug 2022

Contributed by Lukas

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 bo...

187 - Life Lessons From the Bike Trail

07 Aug 2022

Contributed by Lukas

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...

S8 - Catching Up with The Dudes

01 Aug 2022

Contributed by Lukas

The Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, a...

185 - Season Finale - Nothing Stays the Same

30 May 2022

Contributed by Lukas

Update on Google's speech recognition app for people with speech impairments. Plus, a discussion about how acknowledgement of the progression of disea...

184 - Thriving With Duchenne - Jett Foundation

22 May 2022

Contributed by Lukas

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...

183 - Doing The Right Thing with James Mackay, CEO Aristea Tx

16 May 2022

Contributed by Lukas

James Mackay, PhD, Founder, President and Chief Executive Officer of Aristea Therapeutics, has over 25 years of development and commercialization expe...

182 - Comparing Ted Lasso to Reality with Heidi Behr, LCSW

09 May 2022

Contributed by Lukas

Ted Lasso is a popular show on Apple TV about an american football coach who gets recruited to a pro soccer team in London.  One of the show's strong...

181 - Every Person Matters with Tom Hamilton

02 May 2022

Contributed by Lukas

Tom Hamilton is a changemaker in the FA and Rare Disease Communities.  He works tirelessly to promote treatment progress.  He is also a father and i...

180 - The Not So Dark Side with Amy Grover

25 Apr 2022

Contributed by Lukas

Amy Grover has spent more than a decade in the rare disease space - cultivating her passion for helping others in the nonprofit world until recently. ...

179 - Keep Your Eye On The Ball

18 Apr 2022

Contributed by Lukas

Completing tasks is about focus.  If we take our eye off the ball, that's when we get off track.  Listen as the Dudes talk about how this principle ...

178 - Man Turning Into Stone - Joe Sooch

11 Apr 2022

Contributed by Lukas

Joe Sooch points out that we only have one life to live so we better make the most of it.  He has a rare disease called Fibrodysplasia ossificans pro...

177 - The only thing to fear is...

03 Apr 2022

Contributed by Lukas

Some fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. ...

176 - Rare Disease Symptoms - The Devil You Know

28 Mar 2022

Contributed by Lukas

Promising treatments for many rare diseases are on the horizon.  As they start to become a reality, it's important for us to adjust our expectations ...

175 - Making Noise About Hemophilia

21 Mar 2022

Contributed by Lukas

March is Hemophilia Awareness Month! Most people would call him an accomplished musician - Max Feinstein says he's been a noisemaker his whole life. R...

174 - The Dudes with Squirmy and Grubs

13 Mar 2022

Contributed by Lukas

Rude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw.  Battling ableism has become part of...

173 - Don't be Weird - Ennis Rook Bashe

06 Mar 2022

Contributed by Lukas

Ennis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mainly because "it's just fun." We certainly had f...

172 - Rare Disease is Complicated but There's Reason for Hope

27 Feb 2022

Contributed by Lukas

While seeking to live beyond circumstances, we often look past the challenges of our situation.  Maybe this is good, maybe it's bad, maybe both... As...

171 - What if Everyone Is Disabled?

21 Feb 2022

Contributed by Lukas

Our friend Erin Pieper wrote a book called Dismantling the Disability (release date 2/22/22) and in this episode she sets up the discussion by wonderi...

170 - What's Your Strategy?

14 Feb 2022

Contributed by Lukas

We all have goals but we may never reach them unless we have a specific strategy to reach them.  In this episode, the dudes discuss a few of their 5 ...

169 - Season Finale - NO REGERTS!

06 Dec 2021

Contributed by Lukas

Turning 40 caused both of us to reflect on everything we've done up to this point. Do we have regrets? We can't change the past but we can decide w...

168 - 2DD Forum: CureDuchenne FUTURES Conference 2021

26 Nov 2021

Contributed by Lukas

The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 ag...

167 - Peace of Mind with Mobility Roadside Assistance

21 Nov 2021

Contributed by Lukas

Flat tire! Stranded on the side of the highway.   If you have a mobility challenge, or more than two people, you may not be able to ride in the tow ...

166 - Ultra Rare Drugs at No Cost to the Patient - Stan Crooke

15 Nov 2021

Contributed by Lukas

Stan Crooke has been in the drug development game for a long time.  He is the founder of Ionis Pharmaceuticals and now he has pioneered a method to d...

165 - Coaching for Rare and Chronic Conditions - Denise Archilla

08 Nov 2021

Contributed by Lukas

Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood.  That's why Denise Archilla started...

164 - Mental Health: Why Talking About the Tough Stuff Takes the Weight off

31 Oct 2021

Contributed by Lukas

In episodes 155 and 157, we talked about the symptoms of Friedreich's ataxia (FA) and how they affect us, especially the mental and emotional aspect...

163 - Actor, Producer, Person - Patrick James Lynch

25 Oct 2021

Contributed by Lukas

Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and ed...

162 - Superheroes With Once Upon a Gene

18 Oct 2021

Contributed by Lukas

Today we feature episode 87 - Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast.   This episode features a  few different peo...

161 - Men's Mental Health in Rare Disease With David Ross

10 Oct 2021

Contributed by Lukas

It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community.  And then add society's pul...

160 - Money Talks With the Dudes

04 Oct 2021

Contributed by Lukas

Money is a factor in nearly all situations in life - especially when you factor in rare disease or another medical issue.  In this episode the Dudes ...

159 - Patient Pioneers in Gene Therapy with AVROBIO

27 Sep 2021

Contributed by Lukas

Thanks to the AVROBIO team for a great day of patient advocacy. We feel so honored to be a part of these conferences and always take so much away from...

158 - 2DD Forum With The Marfan Foundation

20 Sep 2021

Contributed by Lukas

The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions. ...

157 - Letters to the Younger 2DDs

13 Sep 2021

Contributed by Lukas

Old men know a lot.  Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some ...

156 - Using Technology to Improve Accessibility

06 Sep 2021

Contributed by Lukas

Anthony DeVergillo describes himself as an optimist.  He sees a problem and inserts himself to find a solution. Specifically in the area of video gam...

155 - How We Describe the Challenges of Disability

30 Aug 2021

Contributed by Lukas

Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a road...

154 - SMA Awareness with Nick Sinagra

22 Aug 2021

Contributed by Lukas

August is SMA Awareness Month so we had a conversation with Nick Sinagra to learn about SMA and his journey with this rare disease.  Nick is a true l...

153 - NTSAD Annual Family Conference

16 Aug 2021

Contributed by Lukas

This was the 43rd annual National Taysachs and Allied Diseases (NTSAD) annual conference and we were honored to moderate a panel with Sarah, Kevin, an...

152 - How Do You Use Your Influence?

09 Aug 2021

Contributed by Lukas

User reviews and social media can be used to affect change in business and society.  It gets out of hand when users take advantage of the power that ...

151 - Season Premier: Pandemic Observations

01 Aug 2021

Contributed by Lukas

Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment. ...

150 - Drugs, Turning 40 & The Future

31 May 2021

Contributed by Lukas

Sean just turned 40.  Happy Birthday Sean!  Kyle turns 40 in a few months.  This milestone brings a question into focus:  What if the treatment or...

149 - An Elvis Presley Tribute Artist with Autism

24 May 2021

Contributed by Lukas

Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage. Aaron was bullied when he was young because he w...

148 - Why Sean Hates His Gym

17 May 2021

Contributed by Lukas

The Top 5 Pet Peeves get Sean a little worked up so he continues with a rant about his gym and accessibility.  A conversation with the manager leaves...

147 - DD pt5: My view: Patients Get Medicine at Lowest Cost Possible - Tim Walbert

10 May 2021

Contributed by Lukas

Tim Walbert is CEO at Horizon Therapeutics. He has been at the helm as they've taken several products to market. Listen as he talks about the differen...

146 - DD pt4: Why Sean Baumstark Is Banned From Clinical Trials

03 May 2021

Contributed by Lukas

As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trial...

145 - DD pt3: Pre-clinical & Tacos

26 Apr 2021

Contributed by Lukas

The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristi...

144 - DD pt2: Do Good and...with John Crowley

19 Apr 2021

Contributed by Lukas

John Crowley is the CEO of Amicus Therapeutics.  He is also a funny and compassionate rare disease Dad.  Join us as we learn life lessons and how to...

143 - DD pt1: Half a BILLION Dollars!?

12 Apr 2021

Contributed by Lukas

This is the LAUNCH of the Two Disabled Dudes Drug Development Series.  We have 5 experts lined up to field our questions about the process and how we...

142 - Rare Disease in India

04 Apr 2021

Contributed by Lukas

How do we build an effective Global Rare Disease community?  It all starts with sharing stories and ideas.  Join the dudes as they hear Manish Gore'...

141 - Rude or Cooperative?

29 Mar 2021

Contributed by Lukas

A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'.  ...

140 - A Sister's Perspective on Bullying

20 Mar 2021

Contributed by Lukas

We sent Shelley a 2DD 2021 Desk calendar.  She sent back pictures of her brother.  That sparked a heartfelt conversation about her family and some o...

139 - Where The Hell Are The Instructions?

14 Mar 2021

Contributed by Lukas

Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelcha...

138 - We Only Have One Life to Live

08 Mar 2021

Contributed by Lukas

"There is real power in not caring what others think." Ben's Friends is an online social network for people with rare diseases.  Ben Munoz started it...

137 - Rare Disease Day Special with Psychologist Dr. Al Freedman

28 Feb 2021

Contributed by Lukas

To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can re...

136 - When It Hits The Fan - Part 1

22 Feb 2021

Contributed by Lukas

What you we do when things do not go as planned.  Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for...

136 - When it Hits The Fan - Part 2

22 Feb 2021

Contributed by Lukas

What you we do when things do not go as planned.  Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for...

135 - Goals Don't Accomplish Themselves

15 Feb 2021

Contributed by Lukas

In the last couple episodes we talked about the importance of forming a vision for your future.  This time we take it a step further with a few thoug...

134 - Our Wants vs. Our Don't Wants

08 Feb 2021

Contributed by Lukas

Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal. An important piece of forming ...

133 - Season 5 Premiere - What do You Want out of Life?

01 Feb 2021

Contributed by Lukas

Where do you want to live?  How much money do you want to make?  How big is your house gonna be?  Car? Job?  It's important to dream about these t...

132 - 2DD Forum with the XLH Network

04 Jan 2021

Contributed by Lukas

Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network.  Lis...

131 - 2DD Forum at Ultragenyx Rare Family Day

14 Dec 2020

Contributed by Lukas

It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical.  That's why we are proud to hav...

130 - Season 4 Finale - More 2DD Grievances

30 Nov 2020

Contributed by Lukas

We all know that Sean likes to complain, and apparently Kyle Does too.  Listen to help The Dudes get a few things off their chest.  They were a bit ...

129 - She Created What She Needed - Effie Parks

23 Nov 2020

Contributed by Lukas

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1.  However she soon caught up with all of t...

128 - Addressing Rare Disease Mental Health - Psychologist Al Freedman

16 Nov 2020

Contributed by Lukas

In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event.  ...

127 - Does Disability Force Premature Decisions?

09 Nov 2020

Contributed by Lukas

Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life.  But does ...

126 - I'm Fine, Thanks - Chris Doveton

30 Oct 2020

Contributed by Lukas

Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances. Chris Doveton and Anne are en...

125 - "I know you're drunk, buddy"

26 Oct 2020

Contributed by Lukas

Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive.  Listen to hear the whole story and Sea...

124 - Walk in My Shoes - A Journey With Cystinosis

19 Oct 2020

Contributed by Lukas

Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain.  Clint Moore's son, Chandler liver ...

123 - Why Do We Keep Our True Selves Hidden?

12 Oct 2020

Contributed by Lukas

Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to other...

122 - Red Tape is Easier With Help

05 Oct 2020

Contributed by Lukas

Government programs such as Social Security provide essential services for people with disabilities.  But navigating through the bureaucracy can be a...

121 - How to Join the rideATAXIA Global Challenge

28 Sep 2020

Contributed by Lukas

Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days.  During this time the t...

120 - What is Alport Syndrome? - Kevin Schnurr

21 Sep 2020

Contributed by Lukas

In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure....

119 - Are You Messy Like Kyle or Neat Like Sean?

14 Sep 2020

Contributed by Lukas

Sean and Kyle are polar opposites in so many different ways.  But this is a strength rather than a weakness.  This week the Dudes discuss their diff...

118 - How We Can Serve the Community Through Google's Project Euphonia - Bob MacDonald

07 Sep 2020

Contributed by Lukas

Like it or not, communicating with smart devices has become a huge part of our lives.  For people with disabilities, this communication can be an ess...

117 - What does Team Gleason have in Common with Google?

31 Aug 2020

Contributed by Lukas

Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is comm...

Bonus Conversation With Friends!

26 Aug 2020

Contributed by Lukas

BONUS episode! We received a lot of comments about Episode 114 (the encounter with Debora) so we invited a few friends to join us to talk about the so...

116 - What would you change about yourself if you could?

24 Aug 2020

Contributed by Lukas

If you could change something about yourself, what would it be?  In this episode, the dudes tackle this question as it relates to disability or as it...

115 - Leading the VEDS Movement - Katie Wright

17 Aug 2020

Contributed by Lukas

Where do we start after a life threatening diagnosis.  Start a YouTube Channel of course!  That's what Katie did.  She started connecting with the ...

114 - Don't Judge a Dude by his Wheelchair

10 Aug 2020

Contributed by Lukas

Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situa...

113 - How do we Define Each Other?

03 Aug 2020

Contributed by Lukas

In the opening episode of Season 4, Sean and Kyle admit to being a little lazy lately and then commit to getting back on the wagon.  That's the power...

112 - Season Finale - Different Reactions to Coronavirus

25 May 2020

Contributed by Lukas

Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus?  Sean and Kyle ...

111 - Copiing in Times of Uncertainty with Team Amicus

18 May 2020

Contributed by Lukas

We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent executi...

110 - How Rare Diseases Impact Carriers - Taylor Kane

11 May 2020

Contributed by Lukas

After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old.  She subsequently found o...

109 - Hawk's Eye View on Duchenne MD - Hawken Miller

04 May 2020

Contributed by Lukas

Hawken Miller is an accomplished young writer with a clear purpose in life.  He is an incredible representative for the Duchenne Muscular Dystrophy C...

108 - #QuarantineLife

27 Apr 2020

Contributed by Lukas

As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation.  They prognosticate about...

107 - Patient focused Drug Development - James Valentine

20 Apr 2020

Contributed by Lukas

A brief summary of this episode

106 - No Arms, no Legs, no Problem - Gabe Adams

13 Apr 2020

Contributed by Lukas

Gabe Adams was born without arms or legs due to HanHart Syndrome. He joins us and shares so much about being "different" from other kids, finding his ...

105 - The Dudes Vent

06 Apr 2020

Contributed by Lukas

Sometimes frustrations get the better of us.  And in quarantine, we are all on edge a little more than usual.  In this episode, the dudes put their ...

104 - His Brain Injury Created a New Mindset

30 Mar 2020

Contributed by Lukas

Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury.  His whole life changed and he foun...

103 - Giving Back After Spinal Cord Injury

22 Mar 2020

Contributed by Lukas

Beth Kolbe was injured in a car accident and lost the use of her lower body.  Subsequently she went to Harvard, swam in the paralympics, received a l...

102 - Four Tips for Making Decisions

15 Mar 2020

Contributed by Lukas

We encounter decisions constantly.  Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential li...

101 - Funding Research One Cookie at a Time

07 Mar 2020

Contributed by Lukas

Cookies 4 Cures bakes and sells cookies to fund research for rare pediatric diseases. 

100 - Jeremy Cowart

01 Mar 2020

Contributed by Lukas

A brief summary of this episode

099 - The Scarcity Mindset

24 Feb 2020

Contributed by Lukas

Find out how the scarcity mindset can limit your thinking. John Maxwell on the scarcity mindset: https://www.success.com/john-c-maxwell-6-tips-to-deve...

098 - The Pharma/Patient Relationship - Opportunities to Improve - Andra Stratton

16 Feb 2020

Contributed by Lukas

Andra Stratton was diagnosed with a rare disease called Lipodystrophy that makes her look very athletic and fit due to her lack of adipose tissue. App...

097 - A life of Ehlers Danlos Advocacy - Lara Bloom

09 Feb 2020

Contributed by Lukas

We are often surprised by the twists and turns of life - especially when confronted with disability.   Lara Bloom was surprised when she was diagnos...

096 - Owning up to your shortcomings

03 Feb 2020

Contributed by Lukas

Welcome back! This Season 3! When we get annoyed or mad at others it is important to do a little self-assessment to let the situation teach us how not...

095 - Season 2 Finale - Are you Determined or Stubborn?

25 Nov 2019

Contributed by Lukas

We are closing out this season with a deep conversation about purpose and commitment and how we reconcile our efforts if we do not quite reach our our...