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Thread: Christopher and Dana Reeve Paralysis Act

  1. #31
    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.
    Sincerely,
    Chaz Southard

  2. #32
    link to research equals quality of life thread

    http://sci.rutgers.edu/forum/archive...p/t-81965.html

    I think it is closed for comments now though....

  3. #33
    Three more cosponsors!

    Rep Barbara Lee CA
    Rep Maurice Hinchey NY
    Rep Stephen Lynch MA
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  4. #34
    I feel like taking a bubble bath, IMHopeful is on the job. This is great, I updated that cosponsor list on Carecure for years!

  5. #35
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    Pennsylvania Senators Casey and Specter are now cosponsors. Representatives Tim Holden, Charlie Dent and Patrick Murphy so far.

  6. #36
    I saw that, VJS--excellent! I'm confident Sen. Amy Klobuchar (D-
    MN) will join the co-sponsor list soon. I received a call from her Health Aide today to let me know he has not yet had a chance to speak with her about it, but plans to very soon.

    Significant progres, all--during the 109th congress, there were 33 co-sponsors over a 2 year span. We are edging close to that in a mere 2 months in the 110th congress.

  7. #37
    Bethany must still be up to her eyeballs in bubbles!
    So, I'll post the good news.

    Three more from California!

    Rep Berman, Howard L. [CA-28] - 7/12/2007Rep Capps, Lois [CA-23] - 7/12/2007Rep Harman, Jane [CA-36] - 7/12/2007

    Still so much more work to do. I made calls from my son's hospital room this week. It seemed like an appropriate use of my time. His view was of the BioResearch building that houses the group that is connected to the CDRPF NeuroRecovery Network. I politely explained where I was calling from and asked for their support. Hopefully, I will have some Ohio names to add to this list in the next couple weeks.

    Chuck and Chaz, if you could share what made your effort so successful, it would be useful for others that are advocating.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  8. #38

    S 1183 scheduled to be discussed in the Senate...

    Great news--This bill is set to be discussed in the Senate Health, Education, Labor, and Pensions (HELP) Committee on Wednesday, 7/25/08.

    http://help.senate.gov/

  9. #39
    Senior Member Leo's Avatar
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    thanks Sue,

    this is great......finally

    i hope some one will be able to give us a report

    a good idea to start a call in to those committee members???
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  10. #40
    Quote Originally Posted by Leo
    thanks Sue,

    this is great......finally

    i hope some one will be able to give us a report

    a good idea to start a call in to those committee members???
    No--calls to committee members are not needed at this time and actually may hinder the process. Let's wait and see what transpires, but, I understand there is great optimism it will go well. Holding my breath here--we should know more by days end tomorrow.

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