In case you haven’t heard, the first 2 research projects for Spinal Cord Injury (SCI) have been awarded. One is an Epidural Stimulation Trial through a partnership between Hennepin County Medical Center and the University of Minnesota. The second is a combination study of Oligodendrocyte Precursor Cells (OPCs) and Scar Ablation study in rodents through the University of Minnesota and longtime study supported by the Spinal Cord Society. Each was awarded $125,000 through the Office of Higher Education.
The first is very exciting because it will be trialed in a human cohort with chronic injuries this year!…starting with a few and hoping to expand to more individuals pending more grants. This project not unlike the ones you may have heard about seeks to stimulate movement through the implantation of a small device with electrodes placed over the spinal cord. This has been shown to be effective in several studies around the world to control some movements in the lower extremities and in some cases resulted in return of bowel/bladder/sexual function.
The second is a longtime project funded by the Spinal Cord Society whose lab has relocated to the University of Minnesota under the direction of Dr. Ann Parr.. This study hopes to show that the scar resulting from injury can be reduced in order for regeneration to occur using OPCs which have been studied to remyelinate damaged nerves. Their intent is to prove the strategy efficacious and then follow with a request for human trial.
Thanks to all of you for staying with us over the years, writing and calling legislators, offering your moral support and just being an ear. We are all very excited to watch this unfold as we try and do our part to expedite innovations for the treatment of paralysis from SCI.
If you want to read about a side benefit from this effort, read the previous blog post: Not Just About Money…or something like that.
Thanks again and check out GUSU's Press Release for more info.
GUSU GYM Survey
For those of you who do not know, GUSU is investigating the potential for opening a cooperative Fitness Center for folks with SCI. Please take a few moments and complete the survey here: https://www.surveymonkey.com/s/Z7JZD87
We at GUSU are committed to helping to foster the CURE work. At the risk of oversimplifying we look at the CURE work as twofold:
1. Expediting the research innovations through public policy (the $1 million state fund that just passed), fundraising, educating, organizing
2. Helping to prepare the community for the coming innovations.
Number 2 is what I’m talking about here. We expect that the coming innovations, barring something miraculous, will begin with modest functional benefit. And in order to make the most of that benefit, people with paralysis need to be physically prepared for the intense rehab that will likely follow (in addition to the overall benefit of regular physical exercise). We also believe that the traditional sites for rehab do not currently have the capacity or flexibility to adequately and fully serve the community.
So we are proposing a community owned centrally located facility to provide access for our community, fill in the gaps and get ready.
Please take the survey wherever your opinion falls on the matter. We want to hear from you. Also, please share with your friends in the area and ask them to take the survey as well.
SCI/TBI Bill Has Passed
Great news. Our long struggle to pass this legislation is over...for now. This afternoon the Higher Education Conference Committee passed our initiative into their omnibus budget.
The Bill is passed with $1 million dollar allocation, less than we had hoped but still a victory. Its not entirely finished yet, It will now go on to the floor of each body for full passage, and then of course the Governor, so we hope there are no hiccups from here on out. I will update you.
I can't thank you enough for staying with us, writing emails, letters and making phone calls....and a big shout out to both Billy Scheremet who came to the Capitol last minute to relieve me while I went to a family wedding...and then later Thomas Cloyd for staying this evening to make sure all of our amendments were completed per our request.
And Thanks to David Godfrey (HCMC public policy director) and Tara Erickson (contract lobbyist) for all of their hard work and counsel throughout the session.
I will send out a message this week to thank our legislative authors and supporters, and hope that you will take the time to thank them for carrying this through.
Thank You...its been a long haul, and so much more yet to do to help speed cures for paralysis.
M and all the folks at GUSU
We need your help
CRITICAL!!!Okay Folks this is it. I need all of you to call/write/email the letter I’ve written below because we have run into a speed bump….I’ll try and be brief. The Senate Higher Education Committee is going to introduce its Budget Bill on Tuesday this coming week. At this point the Committee Chair wants to roll our initiative into a singular bill to fund the University of MN’s Regenerative Medicine Bill appropriation. This is not what we want because this will not follow the innovations around the state and it will not give us a voice to decide how the funds are distributed.
SO PLEASE copy the letter below (or feel free to write your own) into an email, or use it to call the Committee members below. IF you can’t take the time for all of them, PLEASE AT THE VERY LEAST EMAIL OR CALL Sen. Bonoff the COMMITTEE CHAIR. WE HAVE TIL TUESDAY when this will be decided.
We have done great work and gotten much farther than we have in the past….this is the last high hurdle for this session. We want to get this DONE. THANKS FOR YOUR HELP. Please copy me in your email at email@example.com
Senator Bonoff and Committee Members of
Committee on Higher Education and Workforce Development
75 Rev. Dr. Martin Luther King Jr. Blvd.
Capitol, Room 325
St. Paul, MN 55155-1606
Senator Bonoff and Committee Members,
Thank you very much for your support of the Spinal Cord Injury and Traumatic Brain Injury
Communities’ request to invest in the research that seeks to provide innovative treatments for
our injuries (SF #766). It is my hope that we are able to retain the spirit of this Bill to support
innovations over institutions, and to give us a voice in the decision making process.
We are following many research projects from HCMC, the Mayo Clinic, the VA, Courage Kenny
Rehab Institute and the University of Minnesota. It is our hope that all of them would be able
to compete for funds and the best among them be recipients of the investment toward
functional improvement for our injuries.
Some of these research projects are poised to move from the bench to the bedside as the
field is advancing, and funding is the bottleneck. Other projects are seeking to more deeply
understand the nature of the injury and investigate the optimal strategies for repair. All of
them are in need of funds to move the field forward and ultimately provide treatment options
for the 118,000 Minnesotans living with these devastating injuries. We are fearful that the
implications of rolling this initiative into a single institution with a broad application of
dollars will lead to a negligible impact upon our concerns.
Thank you very much for listening to us and working hard on our behalf.
Committee Chair: Sen. Bonoff 651-296-4314 firstname.lastname@example.org
Senator Torres Ray: 651-296-4272 www.senate.mn/senatortorresrayemail
Greg D. Clausen (57, DFL)
E-mail: Use Mail Form
Jeremy R. Miller (28, R)
135 State Office Building
Kent Eken (04, DFL)
Melisa Franzen (49, DFL)
E-mail: Use Mail Form
Susan Kent (53, DFL)
E-mail: Use Mail Form
Carla J. Nelson (26, R)
117 State Office Building
Julianne E. Ortman (47, R)
119 State Office Building
Branden Petersen (35, R)
127 State Office Building
Eric R. Pratt (55, R)
23 State Office Building
Kathy Sheran (19, DFL)
Dan Sparks (27, DFL)
Let's Do This
Hello all, THIS ONE IS CRITICAL
Well, the news is both really good and really challenging. It looks like we have a very good chance of gaining inclusion in the House's Budget Bill for Higher Education. This is fabulous and further than we've ever gotten before. In simple terms, it appears we may have passed on the House side. We have yet to know whether we will gain inclusion on the Senate side, but should have a committee hearing scheduled sometime in the coming weeks. Bills in MN have to be
mirrored in both the House and Senate to make it into law.
And herein lies the challenge. We do not yet know how much will be appropriated, in other words how much money will be committed to funding research. And that's why we need you, your family, friends and co-workers now more than ever to call, email or write the legislators I will list below.
Before I do that I want to tell you something that happened in one of our last committee hearings. In preparation for committee hearings we meet with our Bill author and give them talking points to use as they see fit for their introduction of the bill to the committee. In this case it was Rep. Rod Hamilton. He is our author and enthusiastic champion in the House.
Well he didn't use any of the talking points we put together. He addressed the committee and said simply, in my paraphrased recollected quotes: 'this is what its all about, and why we're here'...and 'this is a true grassroots effort by folks who got together with something they care about and have come up here to try and make some change'...and 'its time to pass this bill, that's why we're here'. The committee hearing ended with tears, a few hugs (between legislators) and plenty of excitement on our part from the unanimous support.
I'm telling you this because its true. This is a grassroots effort 5 years in the making and right now we have the best shot at passing this Bill. So we REALLY NEED TO GROW OUR GRASS AND DEEPEN OUR ROOTS. Please call, email or write (in that order of importance) the legislators below and ask your friends and family to do the same so that our voices are heard loud and clear. Tell them this:
"Please pass the Spinal Cord Injury/Traumatic Brain Injury Research Grant Program fully funded at the $8 million dollar appropriation request so that we can accelerate the research that seeks to provide functional improvement to those living with these injuries" (House File #777 when addressing Representatives or Senate File #766 when addressing Senators)
Rep. Bud Nornes Chair of Higher Ed. Committee in the House
Rep. Rod Hamilton our author and champion in the House
Rep. Jim Knoblach Chair of House Ways and Means
Sen. Terri Bonoff Chair of Higher Ed. Committee in the Senate
Sen. John Hoffman our author and champion in the Senate
Sen. Richard Cohen Chair of Senate Finance Committee
Let's All make this happen! And if anyone wants to join us at the Capitol, we'll be there on
Wednesday the 25th at 10am. You can join us as we talk with legislators. email us at
email@example.com and we'll tell you where to meet up.
House Committee Hearing
We have our first Committee Hearing in the House tomorrow, Tuesday 3/3 at 2:45 in Room 5 of the State Office Building: http://mn.gov/admin/images/sob-1.pdf We will be heard in the Higher Education Policy and Finance Committee. This one will be more of a challenge than our previous 2 hearings. We have met with all but a few of the legislators on the committee, and a couple of them are not supportive.
The upside is that the Committee Chair and a number of members have signed on as co-authors of the Bill and our author, Representative Hamilton is an enthusiastic champion.
Once again I’m asking that you call if you can and email if you can’t call the following legislators. There are again 3 things that we want to convey:
Beyond the SCI/TBI communities themselves there is no greater beneficiary than the State due to the likelihood of increased grant awards from the National Institutes of Health and following a treatment innovation an enormous reduction in the costs of care.
Many of the current innovations in the field have come as a result of state seeded funding programs such as we are proposing.
The advisory commission the Bill would establish would insure transparency, no duplication and provide a critically important community voice at the decision making table.
Here they are…I know there’s a lot. The legislators in BOLD are co-authors, so if you can’t contact all, focus on those not in bold:
Representative Bud Nornes (Committee Chair whose district has the headquarters of the Spinal Cord Society in Fergus Falls): 651-296-4946 firstname.lastname@example.org
Rep. O’Neil: 651-296-5063 email@example.com
Rep. Pelowski: 651-296-8637 firstname.lastname@example.org
Rep. Barrett: 651-296-5377 email@example.com
Rep. Bernardy: 651-296-5510 firstname.lastname@example.org
Rep. Christensen: 651-296-4212 email@example.com
Rep. Daniels: 651-296-8237 firstname.lastname@example.org
Rep. Gruenhagen: 651-296-4229 email@example.com
Rep. Heintzeman: 651-296-4333 firstname.lastname@example.org
Rep. Isaacson: 651-296-7153 email@example.com
Rep. Lien: 651-296-5515 firstname.lastname@example.org
Rep. McDonald: 651-296-4336 email@example.com
Rep. Norton: 651-296-9249 firstname.lastname@example.org
Rep. Pugh: 651-296-4315 email@example.com
Rep. Rosenthal: 651-296-7803 firstname.lastname@example.org
Rep. Whelan: 651-296-1729 email@example.com
Rep. Winkler: 651-296-7026 firstname.lastname@example.org
Rep. Knoblach: 651-296-6612 rep.jim.knoblach
Thanks for your help…and if you haven’t, share this with your friends.We can do this together
Paralysis and Climate Change
It occurred to me the other day that Spinal Cord Injury is a lot like Climate Change. No, not that SCI portends the end of civilization as we know it but rather the gravity of proximity. We whose lives have been up ended by paralysis must be something like the President of the Maldives who serves the lowest lying country on the planet. The immediacy of his fight to garner the attention of the world is driven by rising sea levels that will disappear his country, just like we (and those we care about) are driven by the every day reality of a disappeared and unresponsive body.
So, when I send out these messages asking you to sign a petition, call a public official or even simply care about this reality where we live, I get it. Proximity is king and even further our ask is not a one to one effort to solution proposition. If you make a call it doesn’t end paralysis, it just moves a small tick in a big dial towards the end game.
I’m not offering some novel solution to this little conundrum, just letting you know that I get what we’re asking. And to thank you, especially those of you who are not directly affected by paralysis, for caring enough to make a call, send an email, mail a letter, or even just keep reading. I’m convinced we are going to get there and further convinced that more of you taking up the cause will speed up the ‘getting there’.
In an effort to offer you a little bit of proximity, please watch this short video we made: ‘A Conversation about Paralysis’ so you know who is going to the Capitol every week and why.
And then, here’s the ask for this week, Please call/email/write:
Our authors: just to say Thank you for authoring (which means they are our champions who will fight for this effort) our Bill
Sen. John Hoffman 651-296-4154, email@example.com
Representative Rod Hamilton 651-296-5373, firstname.lastname@example.org
These are the legislators we are meeting with this week, highlighted are those on critical committees:
Rep Nick Zerwas 651-296-4237 email@example.com
Rep Kathy Lohmer 651-296-4244 firstname.lastname@example.org
Rep Deb Kiel 651-296-5091 email@example.com
Rep Erin Murphy 651-296-8799 firstname.lastname@example.org
Rep Gene Pelowski 651-296-8637 email@example.com
Senator Karin Housley 651-296-4351 firstname.lastname@example.org
Rep Tina Liebling 651-296-0573 email@example.com
Rep Jerry Hertaus 651-296-9188 firstname.lastname@example.org
Rep Joe Hoppe 651-296-5066 email@example.com
Rep Lien 651-296-5515 firstname.lastname@example.org
Rep Joe Schomaker 651-296-5505 email@example.com
Rep Dan Schoen 651-296-4342 firstname.lastname@example.org
A Conversation about paralysis - video
For our inaugural GuSu Gala, Matthew put together a short film interviewing and discussing the effects of paralysis on some individuals suffering from SCI. It's an honest look with the genuine opinions all those who live with paralysis every day. Check it out below and leave any comments or questions on this post -
Le GUSU GALa