Two Disabled Dudes

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 was different than other kids. He didn't care about the same things and sometimes he didn't say the right things. His mind was somewhere else. Somewhere along the way he fell in love with the idea that people made a living from impersonating Elvis Presley. He gave it a shot and he was hooked. Listen as Aaron talks about becoming an Elvis tribute artist amidst the challenges of living with autism. Connect with Aaron: https://www.facebook.com/AaronElvistribute Learn more about Autism: https://www.autismspeaks.org/

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 Sean unsatisfied because he's not confident anything will change as a result of his feedback. He wants everyone to know that he remained calm during the interaction. We'll count that as a win!

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 different aspects of drug development and pricing. Tim also lets the dudes know that perhaps Sean's face needs to replace Kyle's on the wall at Horizon.

As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety". Jen shares the principles that guide clinical trials and a few tips for those who choose to participate. FARA - curefa.org

The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristina Bowyer of Ionis Pharmaceuticals helps us understand that the patient voice should be integrated into every stage of the process, including pre-clinical. Plus, Sean loses his focus. Enjoy!

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 start a company - and Sean learns that a million is quite large. Amicus Therapeutics: https://www.amicusrx.com/ Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw

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 as patients can insert our influence. This episode is an overview of the Drug Development Process which helps us understand how to avoid spending half a billion dollars on a dead end. Barbara Tate is the Chief Scientific Officer for the Friedreich's Ataxia Research Alliance (FARA). She has an impressive resume and a great sense of humor. She went from academic science, to big pharma, to venture capital, to nonprofit, and now she graciously shares her knowledge and wisdom with us. Our next episode features John Crowley who is played by Brendan Fraser in the movie Extraordinary Measures.

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's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.

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'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately. Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

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 of the experiences in her life with her brother Jeff. Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person. Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org

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 wheelchair, power chair, hand controls...Listen as the dudes discuss and search for answers. Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."

"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 after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.

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 remain proud even if they are not proud of everything about themselves. Dr. Al says a big part of it is gratitude and focusing on your strengths. Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years. Reach out to Dr. Al at: freedmancounseling.com

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 your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.

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 your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives. **This is a 2 part episode so if you haven't listened to part 1, check it out.**

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 thoughts on how to put that vision into action.

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 that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals. Enjoy the conversation and don't forget to subscribe.

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 things but none of it is going to happen on accident. In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things. They also introduce a new segment for the show with their Top 5 Movies. Enjoy!

Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life. If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at [email protected] to discuss. Talk to you soon!

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 have moderated a panel at the virtual Ultragenyx Rare Family Day This Year. https://www.ultragenyx.com/

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 relieved after recording this episode and hopefully you will feel relieved after listening.

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1.  However she soon caught up with all of the episodes and came to the end of her lifeline.  So she created the thing that she needed the most.  She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene.  Listen to this episode to get insight on the value of connecting to others.

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. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al. Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy. More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d Dr. Al's practice: www.freedmancounseling.com

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 it cause them to jump into some things too quickly. Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic.

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 enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone. After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his stiff upper lip. He must learn to open his heart and cry. Saved from the depths of misery by life-saving therapy, he discovers a life beyond despair, rekindles his lapsed faith and finds love again. Join us for a heartfelt conversation with Chris Doveton. Learn more: chrisdoveton.com Get the book on Amazon.

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 Sean's interactions with the landscaping company that the guy works for.

Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain. Clint Moore's son, Chandler liver with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story. Visit the Cystinosis Research Network: https://cystinosis.org/ Watch the Documentary: https://youtu.be/YHnoBbbg4Ao

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 others. So why is our first reaction to pull away when things get hard? Denial? Pride? Self-preservation? Fear? Listen as the dudes try to break down this complex topic. They probably need some professional help... This topic all started with a little column Sean wrote: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/

Government programs such as Social Security provide essential services for people with disabilities. But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all! Listen as she gives us a great start to the conversation and provides resources for where to find out more. https://www.allsup.com/

Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days. During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia. Get more info and register at rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE. Join us on Strava to contribute to the goal of traveling around the globe! Cycling - https://www.strava.com/clubs/710903 Running - https://www.strava.com/clubs/617708 Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf

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. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014. Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books. Website: alportsyndrome.org Socials: https://www.facebook.com/alportsyndromefoundation/ https://twitter.com/AlportSyndFndn https://www.instagram.com/alportsyndromefndn/ https://www.youtube.com/user/TheASFoundation Other links: https://www.organdonor.gov/ https://www.donatelife.net/

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 differences and why they work well together.

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 essential part of making it through the day. However these devices have a hard time understanding speech that is outside what they've heard before. Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments. Bob MacDonald is one of the leaders of the project and he joins The Dudes to talk about the project and how we can all help out.

Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible. Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience disarthria. To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia

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 sometimes awkward interactions with strangers who may be uncomfortable with disability. Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle. This bonus episode is unedited. Enjoy!

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 relates to life in general. Listen and reach out if you have thoughts about this subject.

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 Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation. Find out more at thevedsmovement.org. And find out more about the people behind the movement at translucentone.blog

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 situations. This week the dudes struggle with how to react in these awkward situations. It's good for someone to ask questions but there is a line somewhere. Listen for real life stories and honest conversation.

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 of accountability! And it's the power of their commitment to their listeners - one insightful episode per week for the next 4 months! The meat of the episode is all about how we tend to define ourselves and each other by the immediate circumstances. The Dudes postulate that perhaps we should be defined by the entirety of what we do rather than one or two things. Let them know what YOU think: instagram.com/2ddpodast twitter.com/2ddpodcast facebook.com/twodisableddudes

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 have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom. Season 4 starts in August but there are 111 other episodes to enjoy so check them out. We hope you have a great summer!

We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception! Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of. We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families. The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.

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 out that she was a carrier of this X-linked disease. For a long time it was believed that "carriers don't get symptoms." However, that myth has been busted and Taylor Kane has a clear mission in life. She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases. What is X-linked? The Dudes had the same question and you'll have to listen to find out. As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other." You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media at: Remember the Girls: Web: https://www.rememberthegirls.org/ Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagram: https://www.instagram.com/rememberthegirls/ Taylor Website: https://www.taylorkane.com/ Twitter: https://twitter.com/taylorkane23 Instagram: https://www.instagram.com/taylorkane23/ LinkedIn: https://www.linkedin.com/in/taylorckane/

Hawken Miller is an accomplished young writer with a clear purpose in life. He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne. Writing is his chosen medium and he has a keen interest in the e-sports world. He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person. Hawken is a recent graduate of USC and his journalism experience includes The Sacramento Bee, KTLA, The Washington Post, and Bio News Services. Visit Hawken's website: http://hawkenmiller.com Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/ And find out about the work of CureDuchenne: https://www.cureduchenne.org/

As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation. They prognosticate about how things might change because of this pandemic. Tune in and play along with the thought experiment.

A brief summary of this episode

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 independence, dating, his upbringing in the Mormon-Christian church and so much more. Gabe is no stranger to people pointing, staring or talking negatively in extreme and cruel ways. Still, he has defined and recognizes his own value and has built a platform to inspire and encourage others. Don't miss this interview!

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 focused conversation aside for a bit to vent a few frustrations and ramble aimlessly. Enjoy :-)

Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury. His whole life changed and he found himself in much different circumstances than he had envisioned for his life. Through his struggles, Jason realized that he must let go of the old Jason and embrace the new one. Once he realized this, he started to build a satisfying life on his new path. Join us to learn lessons that anyone can apply to their own situation.

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 law degree from Stanford, practices healthcare law in Washington DC, and gives back to the disability community through pro-bono work. She's kind of a big deal - listen to hear her perspective.

We encounter decisions constantly. Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?". The Two Disabled Dudes believe that Life is about How We React. How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react. In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives: Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning. If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision. Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van. They talk about the face that these decisions do not change hte goal or the purpose in life, they just change the method we use to get there. Remove finances from the situation - If we think about it, it's clear that there are things in life that are more valuable than money. Sometimes, we need to let our health, time, or relationships win out over financial considerations in our lives. In this episode, Sean suggests that we can change the way we think about a decision by removing finances from the situation. He's not saying that we need to stop thinking about finances all together but if we temporarily remove money from the situation in our mind, it can help us think more clearly about things that may matter more to us. Discuss with close friends and family - This is something our past Guest, Jeremy Cowart talked about. Our friends and family know us best, and when we are thinking about a tough decision it is valuable to talk with them about so we can solidify our thinking in our own heads, and get a third party perspective who might be able to provide sound advice. This is only a taste of the conversation. Listen to this episode and see if you can relate - and then leave a comment below with your techniques for confronting the decisions in your life.