Quote Originally Posted by Leo
hi chaz,

funny you should ask cuz for a couple weeks now i had been meaning to ask you to do a favor.

the Medical Research = Quality of Life thread, will you use my letter or your own and drop the folks i listed and see if you can get a reply?

About NSCIA, I was pleased to see they have the SCREA on their front page of the web site, http://www.spinalcord.org/

rock on
hey Leo -- here's a copy of the letter I sent to the national headquarters... I kind of rift off of what you wrote earlier. Do you happen to have a link to that medical research equals quality of life thread... I'll try to do a search anyways.
I did hear back on my initial letter -- but on my follow-up I've heard nothing -- still waiting.

Cheesecake -- I can contact at my local chapter -- but everyone on Massachusetts is on board... well at least I think.
( I sent this 5/29)

Dear (xxxxxx -- the chapter president),
I am writing to you because I could not find a place to comment on the
direction and mission of the National Spinal Cord Injury Association. I was
very taken back by your extensive credentials and successful lobbying
efforts. As a C4/5 quadriplegic I'm incredibly thankful and indebted to
people such as yourself for your hard work lobbying for the ADA and other
quality-of-life initiatives. I'm now coming up to my fifth year living in a
wheelchair and have subsequently been active locally with ADA issues and
nationally with research legislation. I've been reading the quarterly issue
of your magazine and subsequent e-mails and would like to point out an area
that is desperately in need of attention.

Currently, the United States is spending over $80 billion taken care of
people with spinal cord injury yet our community only receives a paltry 80
million per year in research and actually between year of 2005 and 2006 NIH
funding was cut to around 65 million per year. These facts are hard to
stomach, I truly believe research for both assisted technology and
restorative therapies will help improve the quality of life of many people
living with disabilities -- yet the national chapter representing us has
not(from what I have read) alerted us to these facts.

The twice in the past three years I have traveled down to Washington, DC on my own dime
to help advocate and lobby for the Christopher Reeve paralysis act and for
the stem cell enhancement act. As you know there is strong opposition to
stem cell enhancement although, the Christopher Reeve paralysis act has had
little opposition yet also little support from our community -- and I
believe this is because we've not been informed or aware of the importance
of this legislation towards rehabilitation -- and I am not speaking justabout
stem cells but also ambulation therapies and other modalities.

As a young man, I hopefully have many more years living as a member of your
organization and I can only implore you and others to help support and push
other legislation that will not just help with accessibility issues but also
allow someone like me the ability to have extensive rehab and maybe in the
future a restorative therapy. I thank you in advance for your time and
consideration of my thoughts.
Chaz Southard