Hurd on the Hill: National Disability Awareness Month

barbara

Pioneer Founding member
Stefanie is a tireless patient advocate. The lady is amazing! She was extremely helpful in getting the pro stem cell legislation passed in Texas.

October 9, 2017 Hurd on the Hill
https://hurd.house.gov/media-center/hurd-hill/hurd-hill-national-disability-awareness-month

Stefanie Cowley's Story of Perseverance
Since October is National Disability Awareness Month, it gives us the opportunity to celebrate the contributions made to the fabric of our society by our fellow Americans with disabilities. It’s important to highlight people like my constituent and Helotes neighbor Stefanie Cowley who through persistence and dogged tenacity has made life better for so many people.

Stefanie’s life changed forever in 2007 when she was diagnosed with multiple sclerosis (MS), a disease with unknown causes in which the immune system eats away at the protective covering of a person’s nerves. Over the next four years, she struggled to find medical treatment options in the United States and her condition worsened. Relentlessly exploring all treatments, Stefanie eventually resorted to medical tourism and finally began to see progress with a stem cell treatment that was not yet available in Texas. Knowing it could help others just like her, Stefanie spent hours at the Texas State Legislature advocating for Charlie’s Law to allow stem cell therapy access for patients with certain chronic diseases and terminal illnesses, like MS. Thanks to Stefanie, the bill was signed into law in June this year, allowing thousands of suffering Texans to use their own stem cells as medicine.

As treatments and therapy improved her condition, Stefanie joined groups that fight for MS treatment and research, such as Team Wingman in Helotes, and Patients for Stem Cells, who fight for access to adult stem cell therapy. She not only became a voice for those with MS, but also an inspiration to her community. For her tireless advocacy, Stefanie was recognized as the 2017 Advocate of the Year by San Antonio Independent Living Services.

Stefanie’s stem cell treatments became so successful that she could put her weight on her legs again and no longer needed a traditional wheelchair. The only problem was that she could not get a standing wheelchair approved by Medicare which would help her continue to build muscle in her legs and dramatically improve her quality of life.

Stefanie was familiar with my office and district staff because we had worked through some Medicare issues for her in the past, and she approached us for some help on this latest issue. We pinpointed why her previous Medicare applications for a standing wheelchair were getting denied by the Center for Medicare and Medicaid Services and made the fix. She got her standing wheelchair within a week, and in the process, made it easier for people in similar situations to be successful.

I first met Stefanie during a town hall meeting in 2016. She educated me on the issue of stem cell treatments and the peculiarities of the existing law on this topic. Witnessing what she has been able to accomplish on behalf of the MS community in such a short period of time is truly inspiring.

Stefanie’s story of perseverance is an example to us all on how to fight for what is right. It’s an honor to have worked alongside her and to be able to call her a friend.

If you know someone like Stefanie who is fighting the federal bureaucracy and needs some help, please do not hesitate to contact my office at 210-921-3130.
 

SammyJo

Member
That's right, Stefanie has been an incredible force in the effort to make stem cell therapy more available here in the U.S.

Stefanie shows us how important it is to inform our Congressional reps on the importance of regenerative medicine as the most promising treatment for devastating disabilities like MS. Please take a moment to share this story with your representatives.
 
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