The Two Disabled Dudes Podcast - Navigating Disability

Here's what's coming up!

  • Feb 27: 009 - Rare Disease Day Interview with Ron Bartek - President and Co-founder of the Friedreich's Ataxia Research Alliance.
  • Mar 13: 010 - The Ataxian Athlete Initiative - curefa.org/aai
  • Mar 27: 011 - Ron Bartek part 2
  • Apr 10: 012 - Adaptive Sports with Matt Fritsch
Posted by twodisableddudes on February 15, 2017

006 – Nicole Boice, CEO Global Genes

 

The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support – and hope – is abundant.

 

“When I started looking at the stats and facts about Rare Disease…that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn’t anyone talking about it? Why aren’t we hearing about it in mainstream media? Why aren’t there more resources available for these families?’” – Nicole Boice.

Hope. It's in our Global Genes.

Sean and Nicole agree that the diagnosis of a rare disease with no treatment or cure is awful (“It sucks,” says Sean, the wordsmith.), facing the unknown is an insurmountable challenge. However, with diagnosis, by facing the monster of a disease, you can help defeat it.

 

Nicole explains that the goal of her organization, Global Genes, is to provide those diagnosed with a rare disorder and their families with support and education. Often support comes, not through classes on the scientific realities of a disorder, but by the connection of different people sharing their personal hardships and successes with each other. With this in mind, many tangible actions Global Genes takes involves building connection in the rare disease community- whether by empowering activists to raise awareness about rare diseases, or building connections between organizations on a global scale.

 

For Rare Disease Day, February 28, Nicole offers some ways that all of us can help spread awareness: by connecting with a friend or family member with a rare disease and offering them support and information, by hosting or volunteering at a local rare disease awareness event, and even by sharing a simple message “I support #RARE” on social media. See resources and more information at globalgenes.org

 

Nicole closes her interview with the idea that hope is real and is a driving force in her life and in the lives of those with rare disorders.

 

Connect with Global Genes on Social Media:

 

          

Posted by twodisableddudes on February 13, 2017

005 – Rare Disease Day Special Guests

 

In the rare disease community, strength is in unity and supporting one another.

Image courtesy of debra

February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia (FA), the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal.

 

In this episode we talk about what is meant by “rare diseases” and how rare they really are.

 

This episode contains snippets of three interviews that will be released in their entirety later in the month. Nicole Boice, the CEO of Global Genes, speaks about the importance of knowledge in the rare disease community; only by knowing all we can about whatever disorder we may face can we successfully move forward. In the second snippet, Max Bronstein of the Everylife Foundation for Rare Diseases reminds us of the importance of policy issues when seeking treatments for rare diseases. Finally Paul Melmeyer from the National Organization of Rare Disorders (NORD) emphasizes the benefits of recognizing Rare Disease Day, and what that has done for the rare disease community overall.

 

On February 27, the day before Rare Disease Day, our interview with Ron Bartek, President and co-founder of the Friedreich’s Ataxia Research Alliance, will be released.

 

The Two Disabled Dudes invite you to help us spread awareness this month.

 

Organizations Highlighted in This Episode:

 

Global Genes – globalgenes.org

 

EveryLife Foundation for Rare Diseases – everylifefoundation.org

 

National Organization for Rare Disorders – rarediseases.org

 

Friedreich’s Ataxia Research Alliance (FARA) – curefa.org

Posted by twodisableddudes on February 9, 2017

The Big Apple, its Firefighters, Subways and FA – By Alison Avery

 

Alison Avery at airport with service dogAvery sisters at NYC subway platformAlison Avery in scooter on Brooklyn Bridge

I moved to New York City in June last year and a lot of people were a little skeptical as to how I would make it here living with Friedreich’s Ataxia. I made it my personal goal to show myself and them that I could live here, and so far I’ve definitely exceeded that goal. I wanted to discover all of the different routes to travel around the city since I don’t have a car here (no one does!).

I’ve grown accustomed to hailing taxis, maneuvering onto buses and finding my way underground on the subway system. Traveling above ground is simple and easy, but sometimes longer because of traffic. Taking the subway makes me feel like a true “New Yorker” (even though I’m forever a Florida girl) so I tend to take the subway when I can.

The subway is tricky when you’re someone who tries to avoid stairs. Of over 500 subway stations, less than 100 have elevators. And that’s when those elevators are actually working.

On the hottest day of the summer, I took the subway to meet a friend for dinner in Chelsea. I checked MTA.com to see if the elevators at those stations were working, but somehow read it wrong (I was still new to the city!). I took the train down to 14th street only to find that the elevator was not working…. Let me remind you, this is the hottest day EVER and I am stuck two floors underground.

I had always wondered what would happen if I got stuck, but didn’t necessarily want to find out. I guess that day was today. After pressing the call button on the elevator, I was almost immediately connected to someone that could help. It was difficult to hear him over the speaker due to the other trains going through the station, but he said help was on the way.

It felt like I waited for an hour, but it was probably only 20-30 minutes. All of a sudden, a lot of firefighters started walking down the stairs to my rescue!! Some helped me walk up the stairs while the others carried my scooter up. When I finally got to the street, I realized they drove in their fire truck to come get me out of the subway!! #VIP

It’s great to know that there is a system set up to help people who use assistive devices up the stairs when the elevator is broken. New York may not be the most accessible place, but the people here are so nice and helpful. If you plan on visiting the city and would like any more tips on travel, let me know!

Posted by twodisableddudes on January 30, 2017

004 – Travel Gone Wild – How to conquer anxiety during travel with a disability.

There is a lot of anxiety that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that anxiety including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels.

In this episode, Kyle tells a story about hailing a cab in China. This photo will help that story come to life:

Posted by twodisableddudes on January 30, 2017

Business Travel With FA – By Christina

Friedreich’s Ataxia (FA) or not, traveling can be a stressful event between the planning and traveling. It can take a toll on person mentally and physically. Adding a debilitating disease on top of the stress does not make it easy! However, as Gandhi once said, “Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength”. I recently had the chance to travel for work where I decided to overcome my hardships of living with FA with the idea of traveling.
I still try to try live an independent life to the best of my ability. I still walk, with little assistance of a friendly arm or my recently invested rollator. I started working at the Hyatt at The Bellevue in Philadelphia, PA as the Reservations Coordinator this past July. Within months of me working there, I was presented an amazing opportunity to travel to Hyatt’s Corporate Reservation Center in Omaha, NE. This was my chance to travel on my own, connect and meet with other Revenue/Reservations Colleagues and receive systems training to advance my career. Even though I was a little apprehensive not only traveling on my first business trip, but traveling for the first time since my diagnosis of FA (it will be five years this upcoming April). I decide to put myself out there and not let FA define me.

When making flight arrangements prior to my trip, I requested handicap service for boarding on and off the plane and I am very glad I did! With the quick turnover of changing of flights with layovers, I knew it was not practical of walking from gate to gate in time. The wheelchair assistance came in handy (no pun intended!) and it made me feel invincible once again.

My business trip involved systems training all day with our nights free to network. My new Hyatt work family and I would find a spot for dinner and explore Omaha each night. The location that we were staying was in the old marketplace section of the city, which means cobblestones. Cobblestone streets and sidewalks can be an FA’ers’ worst nightmare! However, my team of colleagues was very accepting and welcoming with open arms, literally and figuratively by helping me walk. I couldn’t have asked for a more supportive group of individuals to be traveling with!

Always remember the word “ABLE” is in disabled. Just because you have a fear of doing something you aren’t able to anymore, don’t let it hold you back. I know that I may not be able to accomplish things as effective as everyone else, but I can still do the same things at my own pace and way and still get to the same end result. It is also important to remember to never be afraid to ask for help. There is nothing more critical than your own safety and well-being, it is okay to put your needs first. I had such a positive experience on my first business trip and I can’t wait to do it again!

About Christina:

Christina Logan is currently 26 years old and lives in Philadelphia, PA. Christina works full-time at the Hyatt at The Bellevue, while receiving her MBA at the Johnson & University Online MBA Program. Christina is living a full and independent life in Philadelphia! She is surrounded by constant love and support from her family, friends and her recent fiancé, Justin! She doesn’t know where she would be without everyone and is very grateful for them!

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