show episodes
 
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 b ...
 
Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
 
Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give ot ...
 
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show series
 
There's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you t…
 
Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with acces…
 
When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways. When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, respo…
 
We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show. Some of our favorite epispdes that we mentioned: 055 - Facing the Realities of Physical Changes 073 - Jeff Bell Part 1 - Wh…
 
A guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE. As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone…
 
Adam Bremen is the co-founder of CanDo, the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support…
 
Rare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while. Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News. The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes…
 
The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them. Alok Tayi Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.…
 
On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal miner…
 
Sean loves to play the game Risk online with people he doesn't know. When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him. Until one day he realized it was better to just play the game and not take attacks personally. This concept relates to many sit…
 
Kyle's Wheelchair was damaged on an American Airlines flight in April. It is now September and it is just now getting resolved. While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need. Ultimately Mary's advice…
 
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 introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives. Our response to these decisions is often determined by the priorities we se…
 
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…
 
Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you …
 
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 h…
 
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 dete…
 
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 yo…
 
I really enjoyed talking to Annabelle about her chronic illness Cystic Fibrosis. Annabelle spoke openly about how she got diagnosed with her condition, how illness has changed our outlook on life as well as the importance of psychological support for individuals with a chronic illness. Annabelle has really highlighted how much chronic illness can a…
 
In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world. Learn more about the Patient and Family Forum, taking place June 26 in Cle…
 
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.By Google's Project Relate
 
In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique.To learn more about Cancer Commons, visit their website here. You can also conne…
 
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 F…
 
James Mackay, PhD, Founder, President and Chief Executive Officer of Aristea Therapeutics, has over 25 years of development and commercialization expertise in the pharmaceutical industry, including 6 drug product approvals across multiple therapeutic areas. James joins The Dudes to discuss his experience and how he is contributing to and benefiting…
 
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 strongest themes is mental health and how it affects everything we do. Heidi Behr is a Licensed Clinical Social Worker (LCSW) and she joins us to talk about how Ted Lasso Portrays mental health and therapy.…
 
In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutation…
 
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 is constantly balancing between protection, and encouragement of his daughter Annie and all those in the FA community. Listen as Tom shares his perspective on parenting, advocating, and working toward a tr…
 
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. Now, Amy is using her expertise and heart of gold to bring patients and industry together in pursuit of better outcomes. As the newly appointed Senior Director of Patient Advocacy with Catalyst Pharma…
 
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 progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone. Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determ…
 
In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research. Keep up with the Myrovlytis Trust and their new initiatives here: Myrovlytis Trustwww.myrovlytistrust.orgLinkedIn: https://www.linkedin.com/company/the-myrovlytis-trustTwitter: @Myrovlytis BHD Foundationwww.bhdsyndrom…
 
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 of what symptoms could potentially be relieved. Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.…
 
Rude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw. Battling ableism has become part of the struggle but they continue to be an incredible example for the rare disease and disability communities with their marriage and their YouTube channel: Squirmy and Grubs which has over 900k subscribe…
 
Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the E…
 
In this episode, I speak to Carly who has been diagnosed with thyroid cancer in both 2017 and 2021. Now in remission, Carly still gets symptoms such as fatigue which can affect her day-to-day life. I talk to Carly about care young people need in hospital, help we need from professionals, support Carly has had for her mental health and advice she wo…
 
Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and …
 
In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.By Patient Worthy
 
This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.…
 
In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy. To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj. Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients a…
 
The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life. In this 2DD Forum, our Friends Jake and Glen taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conve…
 
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 truck with your car. That's where Mobility Roadside Assistance can help. They will send an accessible vehicle to pick you up. Listen to find out all about their service from their CRO, Marcus Norton.…
 
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