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Posts Tagged ‘Travis Roy Foundation’

It would seem only right that the Push to Walk staff and I spent the last few days of September at the Working 2 Walk Science and Advocacy Symposium in Boston this past weekend.

Marilyn Smith and her entire team at Unite 2 Fight Paralysis (U2FP) hosted an amazing event that brought together researchers, scientists, advocates, related professionals and people with SCI and their families to hear the latest information as related to finding a cure for SCI and how to advocate as a community.

While much of the science was over my head, I am excited and energized about all that is going on in the US and abroad to find a cure for SCI. Admittedly, I am also frustrated at just HOW LONG this stuff takes! But it is exciting to learn about new research and hear updates from those who have presented at previous conferences.

Travis Roy’s opening remarks on the second day of the symposium were open and honest, revealing personal details about his challenges from the moment he opens his eyes in the morning. While mostly familiar to me, I hope his comments opened up some other eyes and brought just a small dose of reality to those working for a cure in their labs and not necessarily knowledgeable about the intricate difficulties a person with SCI faces each and every day.

U2FP does an awesome job of not only pulling together this conference, but also spreading the information afterwards. While some or most might not be available yet, stay tuned to the following links for posted details:

Unite 2 Fight Paralysis

Care Cure Forums for Kate’s incredible live blogging

(I see Care Cure has recently updated their forums, so please be patient if you find any bugs or problems. I know Wise Young and other moderators are working hard on needed fixes. They are scientists and advocates, not IT experts. It might some time to iron out the new system.)

Travis Roy Foundation

Here’s to hoping research continues for SCI and even more people and funds are allocated to work on this area. I am thankful there are dedicated scientists and teams doing a lot of exciting work, and pray every day that a cure will be found………we must ALL work towards this goal, support the research and ADVOCATE for ourselves!

Cynthia

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At this past weekend’s Sports and Recreation Expo held at Helen Hayes Hospital, there were a number of vendors there with wheelchairs, vehicles, sports equipment and other information and resources. It was a great combination of products and services for people with spinal cord injuries and lots of other disabilities. Some of the vendors provide equipment that would be considered “medically necessary” like wheelchairs and lift systems if a person cannot transfer him or herself. I consider driving a neccessity, but that is my own opinion. In the eyes of the funders or government systems, it is quite difficult and time consuming to get funds to either purchase a vehicle or have it modified with hand controls and other adaptive equipment. Then there’s all the “extra” kinds of equipment that are definitely not covered by insurance or other programs, but have the potential of providing exercise, recreation and social activities. That’s what I’ll focus on here today. (I do acknowledge and understand that there are many other financial challenges as well. I do not mean to neglect them, but just focusing on one area today.)

One of our Push to Walk clients attended the Expo and saw some really cool stuff. After mentioning how he’d love to have one of the things he saw, he quickly acknowledged that the price tag was beyond his means. First, it seems like “stuff” for people with disabilities is just so darn expensive. As soon as something is described as helping people with disabilities, the price tag goes up considerably. For people that are handy and creative, they often build or rig something up for themselves that works just as good if not better than a product they could buy. This happens way too often, and it upsets me. I don’t know the business of manufacturing and distribution, but I do know equipment is very expensive and customer service is lacking in many, many companies who provide products to people with disabilities.

For sports and recreation equipment, there are a few resources that are worth checking out for individuals who want to buy their own stuff. I know there are requirements and guidelines for applying, but with persistence and some hard work, you might just find funding to help you. Check out the Travis Roy Foundation (www.travisroyfoundation.org), the Kelly Brush Foundation (www.kellybrushfoundation.org), The Challenged Athletes Foundation (www.challengedathletesfoundation.org) and Freedom on Wings of Sport (www.wingsofsport.com). Maybe one of these will fit your needs and you can apply for funding. Also HelpHOPELive, formerly NTAF (www.helphopelive.org) can help you set up a fundraising plan to assist you in your efforts.

While these approaches may be time consuming and tricky to navigate, it might be worthwhile in the long run. Check them out so you can go out there and have some fun. Let me know how it goes. I’ll be waiting to hear from you!

Cynthia

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