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 March 27, 2017

011 – Ron Bartek Part 2 – Collaboration

As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable.

Ron Bartek

Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food.

 

Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer – nothing.

 

To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news – the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that.

 

Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors.

One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend.

 

Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure.
The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them – helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.

Posted by twodisableddudes on March 13, 2017

010 -Adaptive Equipment Grants – Ataxian Athlete Initiative

Ataxian Athlete Initiative equipment grant

The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibitive for someone with a disability.

 

Since 2009, the Ataxian Athlete Initiative has provided 32 individuals with adaptive cycling equipment. The application for 2017 is available now until May 1; any person with ataxia can apply by clicking “Apply for an AAI Grant” at curefa.org/aai, giving information on the applicant and what kind of equipment would work for them. Please remember that this is a competitive application process and funds are limited.

 

Some tips to consider when applying to the AAI:

  1. Try out various adaptive equipment. Sit in different equipment. Take a spin. Determine what is most fitting and most comfortable for you.
  2. Be honest. Tell us how you, individually, would benefit from receiving funds from the AAI, and what impact it would have on your life.
  3. Be unique. Make your application far above general – make it personal. Speak from the heart. And remember to focus on what you can and will do.

And don’t forget that even those who don’t receive full or partial funding from the AAI will receive tips on how to make their application stand out more for other equipment grant programs or for the AAI again in the future.

 

Some of the links we talked about in this episode:

Posted by twodisableddudes on February 27, 2017

009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA)

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich’s ataxia (FA), this organization and Ron himself are special to us.

 

Note: This episode has some audio imperfections. We still chose to release it, going against the advice of our audio producer. (You’re awesome, Jake.) So we give you the first half of our interview with Ron Bartek. The audio problems are slight, and sound like Kyle banging together two halves of a coconut every now and then. Picture that and we hope that you are able to enjoy this interview as much as we did. Part 2 of this interview comes out in March.

 

In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War.

 

Shortly after that treaty was signed, Ron’s son Keith was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.

 

In discussing the benefits of Rare Disease Day, Ron seemed almost giddy when he described it as the rare disease community being able to voice their opinions to those in charge of the fields of medical  research, such as the NIH or the FDA, “increasing the volume and frequency of the patient voice”.

 

Reaching out to the top medical institutes cannot be stressed enough,  says Ron. On June 2, FARA (in partnership with MDA and NAF) is planning a Patient Focused Drug Development Meeting with the FDA. The purpose of this meeting is to remind the FDA of the human quality of a rare disease that they may not hear much about, FA.  Patients will be able to participate in person or live, online – FARA will publish details on how to get involved.

 

Even though some people may see the FDA as a barrier to finding effective treatments or cures for rare disease, Ron is passionately against that idea. He sees FARA’s relationship with the FDA as one of our greatest assets. The goal of FARA and the goal of the FDA is the same – to find a safe and effective treatment and cure for FA. Rather than see the FDA as a barrier, Ron encourages us to see them as trusted teammates.

 

Whether dealing with The Soviet Union or the FDA, Ron shows the power of peacemaking. We are lucky to have him as a leader for us in the FA community.

 

REMEMBER THAT RARE DISEASE DAY IS FEBRUARY 28. MAKE YOUR VOICE HEARD!

 

“See you again, and see you at the finish-line.” -Ron Bartek

Posted by twodisableddudes on February 22, 2017

008 – Paul Melmeyer, Associate Director of Public Policy, NORD

“Alone we are rare. Together we are strong.” –National Organization for Rare Disorders

In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases.

 

NORD’s goal is to be a one-stop shop, offering aid to those facing the challenges of a rare disease. One of the benefits of NORD in particular, and in the entire rare disease community, is the strength of collaboration. That with the same goal in mind – helping with the challenge of rare disease – the collaboration of the entire rare disease community is probably its greatest strength. As more and more people become more and more involved in advocacy within the rare disease community, it’s exciting to picture the progress that can be made 5, 10, 15 years in the future.

 

Paul tells us about the motivation and dedication of the “intrepid mom’s” who founded NORD over 34 years ago. He says that the main reason NORD has been effective for so long is because it tries to be “the voice of those with disabilities.” He credits much of NORD’s success to relationship-building with other entities in the rare disease community.

 

As the U.S. sponsor of Rare Disease Day which began in Europe in 2008, NORD has played a vital role in raising awareness and continued support, in many different facets, for the entire rare disease community.

 

For more information on NORD, please visit: www.rarediseases.org

For information on Rare Disease Day, please visit: www.rarediseaseday.org

Posted by twodisableddudes on February 20, 2017

007 – Interview with Max Bronstein of the EveryLife Foundation

 

“We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments on the market for those diseases. We have a long way to go and there’s a lot of work that needs to be done if we ever want to get to the point where we have one treatment for all of those diseases or even multiple treatments – and that is what our foundation is set up and designed to do.”

 

For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access to treatments or cures.

 

Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways.

 

One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field often overlooked or forgotten.

 

Another way that Max is a voice for those in the rare disease community is by working in social policy issues. This is when Max sets up meetings with politicians so that the rare disease community is represented. This involves dialoguing with senators and representatives on Capitol Hill whenever drug costs, talks of healthcare, or any other issue related to the rare disease community arises, and also just to meet with them regularly to remind them of the reality of rare diseases. He regularly goes to both the White House and Congress.

 

Max explains these to us and walks us through a big success that The Everylife Foundation and other organizations helped push through instituted: the 21st Century Cures Act.
Keep in touch with The Everylife Foundation to keep up with all of their diverse efforts and  find out how you can get involved! Visit their website at http://everylifefoundation.org, and follow them on Facebook: https://www.facebook.com/EveryLife4RareDiseases/, and Twitter: @EveryLifeOrg.

Lorem ipsum dolor sit amet, sed audiam accusata te, no ubique indoctum has. Qui id fierent volutpat, ad feugiat deleniti nam, posse timeam duo eu. Eos id veri perpetua, eu eum congue nonumes, ne mei similique intellegat. Sit fugit eripuit definitionem eu.Vim ea soluta praesent maiestatis. Mel illum iudico option ut, nemore scribentur definitiones est no. Ius id tation virtute epicuri, postea diceret ei nec, vix mazim graecis intellegebat ut. Tempor mandamus duo et. Id feugiat alienum expetenda sed

Quaestio constituto id vim. Ius erat causae liberavisse te, est no vitae debitis oportere. Ius et quod eros populo, numquam sanctus definitiones eu vim. Usu quod regione ne, facilisi ullamcorper sit at. Ei nonumy aperiam mentitum vel.

Ex vel nisl mundi, eum ne nominati principes iracundia. Ad choro appareat eam, ex has oblique offendit maiestatis. Pri malis voluptatibus ea. Duo an nulla legendos, ipsum novum ubique cu quo. Oratio putant qualisque id quo, pri at error iudicabit.

Ut nonumy postea nec. Harum reprimique in cum, vivendo eleifend dissentias at vis. Eu aeterno consulatu nec, id eum simul dolor honestatis. Veritus lucilius forensibus sea ea, possit debitis facilisi mei ex. Ad hendrerit incorrupte contentiones vis, eos at lobortis facilisis. Voluptua abhorreant vel eu, eruditi sententiae adipiscing sea id.