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Posted by on May 27, 2015 in Blog, GUSU, SCI CURE, SCI Research Fund Bill, TBI Research Fund Bill | 1 comment

Its Official

Hello all,

Governor Dayton signed the Higher Education Bill on Friday which, means we have officially
passed our Bill into an official mechanism to fund SCI and TBI research! 5 long, and often
frustrating years of work have borne fruit. I just finished writing a short piece for Access Press,
which will be published in the next issue, and it pretty much sums up what I want to say.

I’ll preface it by saying that for many of you I am the face of this initiative, but you need to
know that there are many other faces that complete the mosaic of this fine victory tapestry. And
I thank them, and you for supporting us along the way.

There’s one person who deserves a special thanks. His name is Rob Wudlick, GUSU’s
Board Chair. I credit his work in large part with our success this session, by setting up countless
appointments, making critical connections with legislators and driving all of us further. So, when
you see him thank him…or drop him a note: rob@gusu2cure.org

In the next couple of days, I will be sending out one last request (pertaining to the Bill!) to
send thank you notes to our legislative partners, institutional partners and supporters. Watch for
it and please drop them a note.

Thanks

I have a vivid imagination, so bear with me. The other day I was walking down the sidewalk
and had this strong sense that the sidewalk was going to give way under my feet. I smiled at
myself for thinking that its just my winter weight talking to my subconscious. Then I realized that
for 5 years I’ve been feeling the weight of passing a state initiative to fund medical innovations
for the treatment of paralysis. But as I walked to my car, I smiled at myself again because its not
a weight I’ve carried alone. I believe the sidewalks are safe.

     I first met with Sen. Jeff Hayden 5 years ago this past April to ask if he would author a Bill to
fund Spinal Cord Injury Research directed towards curative therapies. Back then I was pretty
green for a budding activist, translated as naively optimistic. I was convinced that everyone I
came into contact with would see the indefensible logic of investing a little money into this
critically underfunded area of medical research. Needless to say I didn’t stay green for long.

     But 5 years later, we passed a Bill that establishes a SCI/TBI research grant program that
will seed research projects working towards the functional improvement of these injuries. The $1
million allocation is quite a bit less than the $16 million that we asked for but its a starting point
that will not only direct funds to critical research projects, but also give our community a voice in
what projects reflect our priorities.

     This is so very important because The National Institutes of Health has reduced grants to
SCI research from $94 million in 2013 to $81 million in 2015. That may seem like a lot of money
to Jane Q. Public, but I would remind you that HIV/AIDS spending (same numbers of people as
SCI) through the NIH will be $3 Billion in 2015.

     You may have noticed I wrote that ‘I met with Sen. Hayden’ and that ‘we passed a Bill’. And
this brings me back to my vivid imagination and the would be crumbling sidewalk under my feet.
Yes, I brought an idea (that was not my own but passed on by other passionate SCI advocates)
to the legislature, but it was WE who passed it.

     I would not have gotten very far without the  passion and commitment of the SCI community who began to make this cause their own: Rob and Billy, Thomas and Joe, Kelsey and Lynne, Luann and Joey, Jenni and Jay, Todd and many,
many others who came to the Capitol, testified, wrote emails and made calls.

     Much can be accomplished when WE imagine it.

Thank you so much for all of your support and encouragement.

1 Comment

  1. Thank you all so much for your hard work and perseverance! I, for one, really appreciate the time and effort you put in for something that will benefit people like us for years to come. You are true heroes!!!

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