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Posts Tagged ‘Care Cure Forums’

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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Thanks to the entire group at Unite 2 Fight Paralysis headed up by Marilyn Smith and the Working 2 Walk conference that was held in Irvine, California at the beginning of November. Our Push to Walk trainer, Tommy Sutor, attended the conference and was very excited to hear about the research that is going on from many different scientists. He came back with a ton of information to share, and has been telling us what he learned. So many exciting things going on!

One of the most important areas of the conference involved advocacy  and how people with spinal cord injuries need to join together and fight for a cure. While the areas of maintaining and improving health and wellness are important (very important, in my opinion if people want to be ready for a cure), the focus seemed to be on making advocating for a cure a priority now more than ever. Several people spoke about the current efforts and what individuals can do to contribute to the cause. As with most areas of concern, banding together and working in a unified group is sure to have more positive results than working separately and independently.

Please check the following links to learn more about what went on at the Working 2 Walk conference. Sorry I couldn’t be there this year – Hurricane Sandy derailed my plans (along with many others I am sure), but I look forward to attending next year in Boston. And since it will be back on the east coast, I look forward to more staff members attending as well. Thank you, Marilyn, for your hard work!

Check these links for more info:

http://working2walk2012.wordpress.com/2012/

http://www.u2fp.org/

Cynthia

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Hello Everyone!

I am very excited that our Push to Walk trainer Tommy, my daughter Arianne (newly graduated as a DPT – Doctorate of Physical Therapy) and I will be attending this year’s Working 2 Walk conference in Irvine, CA. Marilyn Smith and the Unite 2 Fight Paralysis team does an awesome job of bringing together the best and brightest in the field of spinal cord injury research to update consumers and professionals on the current status of progress being made.

I attended the two previous conferences in Phoenix and Maryland, and am very happy to be going again this year. In addition to hearing speakers that include Jerry Silver, Frank Reynolds and Dr. Oswald Steward, I love connecting with friends around the country and meeting new friends, all of whom are involved in the SCI community.

The conference will conclude with a tour of the Reeve-Irvine Research Center, which is sure to be exciting and informative! Tommy is especially interested in all things related to research and SCI, so this is sure to be a highlight of the trip.

Check out the website for the conference (www.working2walk.org), and follow the Care Cure posts that usually keep track of all the conference happenings (http://sci.rutgers.edu). I’ll give you a summary when we return.

Cynthia

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In one of my recent blogs, I mentioned standing frames. While this post doesn’t necessarily follow my “schedule” which would address challenges and struggles, the idea of fitting in time to “stand” on a regular schedule could be considered both a challenge and a struggle for some people. From what I have learned about SCI, the frequent use of a standing frame is one of THE most important things a person can do who is paralyzed.

The results and benefits from standing and being weight bearing are many: just standing and stretching out the body from the sitting position offers many benefits to the body’s systems and organs – circulation, digestive, urinary and bowel – to increasing range of motion, improving cardiovascular health, and improving posture. Let’s not overlook the more obvious result – being upright! For many people, this is very important psychologically, and can improve one’s positive feelings and outlook on life.

At Push to Walk, we have found that clients who do stand on a regular basis have less complications than others. If you don’t have a standing frame, and could benefit from using one, check out www.easystand.com. Or do some research on the internet; I remember reading how some people built one for themselves. Maybe that was on CareCure (an excellent resource for all things related to SCI – http://sci.rutgers.edu) or Apparelyzed (another great resource – www.apparelyzed.com). Some insurance companies DO cover standing frames, and it is worth appealing if you get a denial.

The challenge is – making time to DO IT! As with lots of different things we don’t really want to do, we make excuses, never get around to it, or plan on doing it tomorrow (which becomes next week, then next month, etc.). THE TIME IS NOW! Start standing, and do it on a regular basis. Watch TV or a movie while you’re standing. If you have the kind with a tray, put your computer up there, or a book. Something to help you pass the time. I know my son will even stand while he and a friend are watching a movie. Even try playing video games! The important thing is you’ll be STANDING!

For those of you reading this that are able bodied and take standing very much for granted, think of NOT being able to do it.

For those of you who have injuries or disabilities that make standing on your own difficult or near impossible, please tell me what benefits you have found from using a standing frame.

OK, I’m getting off my soap-box for today……………..

Cynthia

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