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Posted by on Jan 28, 2013 in Blog, Change.org, City Pages, Dr. Ann Parr, Gabe Rodreick, Jack Jablonski, SCI CURE, SCI Research Fund Bill, Senator Jeff Hayden | 0 comments

Update on the Bill and other stuff

Hello all,

I heard back from Sen. Hayden’s office this morning, and here’s the latest:

Liz at Sen. Hayden’s office has submitted a request for the Bill to be heard in its first committee (Health Policy) and it will likely be scheduled for either Monday or Wednesday of next week. She will let me know as soon as she gets confirmation and then I will let you know here.

Allow me to reiterate something I said Thursday night (thanks to all who came out or watched on the webcast!). The time is NOW for us to Speak up and make some noise. At the Press conference on Wednesday there were 3 people in chairs…Gabe, Kathy Allen (who came down from Cross Lake with her husband) in support of the Bill, and Nick Cardenas (long time quad and disability activist) who came to voice his opposition. Nick passed out statements highlighting his view that this Bill would take funding away from services to SCI folks, and further that this is an effort that would simply line the pockets of an already well to do scientific community.

We need to make sure that our voices are heard, and that legislators understand that voices like Nick’s are a small minority….no less valuable, mind you, but not representative of what I believe to be a larger voice of SCI folks who want a CURE!

So please, if you can come join me at the hearing….if you can’t please write a statement regarding your support and email it to me at matthewrodreick@u2fp.org I will add it to my own statements as well as deliver the petition.

With regard to the petition, we are under 1,000. If you have yet to sign, please do. If you have yet to share it, please do. If you have shared it, share it again and let people know that we will be delivering it next week, and we need the support of your friends, family and co workers. Click on the petition tab on the home page and sign away!

If you need something to spell out what’s going on send people thisĀ  link to the City Pages story that came out last week. Its a well written piece that does a nice job of highlighting the challenges of living with paralysis, the research to cure its effects and the need to fund said research. Its not the prettiest portrayal of ‘yours truly’ but I’ve never been accused of being very pretty!…neither is living with a SCI for you or your family.

Thanks again to those who came out Thursday night. It was a fun event, and great to meet so many of you. I hope you enjoyed it as much as I did. I am tweaking a few things in the ‘film’ before I post it here and a few other places. Hope to be done this week, but will let you know. My hope is that you can use it to get our story out!

Thanks again for your support….warm up your voices, its time to sing!

M

 

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