Spinal Cord Injury Support

I am very hopeful in the science and can only hope that scientists continue to receive the funds and support they have to continue their work to produce therapies and medicines that will not only help people but will as far as I believe create a framework for a new 21st-century economy and a health care system geared towards ending chronic illnesses and not taking advantage of them through healthcare insurance and pharmaceutical companies. Right now it is a battle for research funds as well as political support which is in constant limbo between social liberals and conservatives.

February Conference 13- “Progress in Spinal Cord Injury Research-The NYS Program” view the program here

January 2013- Update on 2012 Efforts Towards the New York State Spinal Cord Injury Research Program (SCIRP) & Moving Forward

The past year was a busy year at the Capitol and a great deal of information in connections have been traded and developed. Unfortunately the governors 2012-2013 budget that passed did not appropriate any money to the research program, making it difficult for efforts to pass the amending bills that would protect an adequate enough portion of the funding stream (motor vehicle moving traffic violation surcharges) for the program, to be appropriated annually to the research program rather than further diversion into the general fund (the debacle initiated in 2010 and the reason for our advocacy). The 2012 amendment bills (sponsored by Assemblyman Kevin Cahill A. 7478, and Senator John Bonacic S. 4934) both moved close to the floor for a vote but did not make it out of their associated rules committee after they successfully passed through the appropriation committees.

It is important to note that the new bills have been entered into the record for the 2013 session as A.1147 (Cahill) S.1883 (Bonacic). http://open.nysenate.gov/legislation/bill/S1883-2013 – the current bills for those who want to read the text of the legislation or to see whether or not their legislators have signed on as cosponsors.


It is also important to note that these bills would allow for 5.6% of the appropriate surcharges to be allocated to the program. This surcharge was something created by the initial SCIRP law in 1998 (http://www.wadsworth.org/extramural/spinalcord/board_statutes.htm) and has garnered the state over $150 million in 2010 alone, but because the program allows for “up to and not to exceed $8.5 million” to be appropriated to the research programs trust fund annually, New York State has interpreted that without any minimum included the annual appropriations can be a whopping ZERO. If any readers are having trouble wrapping their head around that, well… you’re in the same boat as us. A program that developed a funding stream of over $150 million for the state is not even being given 5% of its earnings.

Dec10pic2

In December of 2012, accompanied by advocacy partners Paul Richter (pioneer of 1998 SCIRP legislation), Terry O’Neill (Yale graduate and former legislative assistant), and Dr. Sally Temple (Director of the Neural Stem Cell Institute in Rensselaer research grant recipient), we headed to the capital for an appointment with the Governors Deputy Secretary of Health James Introne, Deputy Commissioner of Health James Clancy, and the Director and Assistant Director of the Brigs Center at the Wadsworth Center (DOH branch overseeing SCIRP), Jill Taylor and Vicki Debyshire. Our purpose was to request that Governor Cuomo include funding for the research program in his upcoming 2013-2014 executive budget. If funding is included within this next budget cycle (besides the obvious revitalization of lucrative research), passage of the legislation to secure that funding will be that much more palatable to legislators if they see the governors proactive support. Our meeting was fairly lengthy and we had a thorough opportunity to speak and provide written material for discussion, but as any seasoned capital advocate will come to learn, you never get a definite answer from your hosts no matter how convincing the case. I’m going to include Mr. Introne’ s response to our meeting below. They absolutely got the message but it is important that we now hold them to it and make funding this program a priority. 

Mr. Introne response

It is almost guaranteed that someone in your family or group of friends will be impacted by a devastating neurological illness within their lifetime and the costs and level of care are astronomical. Research into spinal cord injury bridges gaps between disease processes involving the Central Nervous System because so much research in this field has a high likelihood of being applicable to other illnesses. SCIRP is a high-tech job creator and comes at no cost to the taxpayer by the way in which it levies its funding from surcharges imposed by those charged with moving traffic violations. So help us reinvigorate this program and lead the way into a new era of curing the sick rather than treating them for a lifetime. We are asking any and all interested parties to please help us by writing letters to your state representatives as well as the Gov.’s office in support of the New York State Spinal Cord Injury Research Program and passage of A. 1147/ S. 1883.

Here’s a list of key figures we suggest you focus your letter writing, I apologize for the inconvenience formatting, WordPress is kicking my butt.

GOVERNOR AND LEGISLATIVE LEADERS                                                               -Hon. Andrew M. Cuomo Executive Chamber State Capitol Albany NY 12224,  -Hon. Dean Skelos Republican Conference Leader New York State Senate Room 909 LOB Albany, NY 12247,                                                                                                -Hon. Jeffrey D. Klein Independent Democratic Conference Leader New York State Senate Room 304 LOB Albany NY 12247,                                                         -Hon. Sheldon Silver Office of the Speaker New York State Assembly Room 932 LOB Albany NY 12248.

EXECUTIVE DEPARTMENT:                                                                                            -Hon. Nirav Shah, M.D., MPH Office of the Commissioner NYS Department of Health Corning Tower Empire State Plaza Albany NY 12237,                              -Hon. James Introne Deputy Secretary for Health Executive Chamber State Capitol Albany NY 12224,                                                                                                     -Hon. Robert L. Megna Office of the Director NYS Division of the Budget Agency Building 1 Empire State Plaza Albany NY 12238

FISCAL COMMITTEE CHAIRS:                                                                                        -Hon. John A. DeFrancisco New York State Senate Standing Committee on Finance Room 416 Capitol Albany, NY 12247,                                                           -Hon. Herman D. Farrell New York State Assembly Committee on Ways and Means Room 923 LOB Albany NY 12248

HEALTH COMMITTEE CHAIRS:                                                                                     -Hon. Kemp Hannon New York State Senate Standing Committee on Health Room 420 Capitol Albany, NY 12247                                                                             -Hon. Richard Gottfried New York State Assembly Standing Committee on Health Room 832 LOB Albany NY 12248

VETERANS AFFAIRS COMMITTEES:                                                                          -Hon. Greg Ball New York State Senate Standing Committee on Veterans Affairs, Homeland Security and Military Affairs Room 817 LOB Albany NY 12247,   -Hon. Michael R. Benedetto New York State Assembly Committee on Veterans Affairs Room 602 LOB Albany NY 12248

SPONSORS OF BILL S. 1883/ A. 1147 :                                                                          -Hon. John J. Bonacic New York State Senate Room 509 LOB Albany NY 12247,                                                                                                                                             -Hon. Kevin A. Cahill New York State Assembly Room 713 LOB Albany NY 12248

New York State Spinal Cord Injury Research Program (SCIRP): An Overview

“The New York State Spinal Cord Injury Research Board distributes research grants to find a cure for spinal cord injuries.More than 16,000 New Yorker’s suffer with spinal cord injuries. In July 1998, landmark legislation was enacted to create the New York State Spinal Cord Injury Research Board and allocate funding to the Spinal Cord Injury Research Trust Fund. The purpose of the fund is to assist leading researchers with ongoing and new efforts to find a cure for spinal cord injuries.Since its inception, the Board has recommended more than $71 million in research awards to some of New York State’s finest research teams.”-New York State Department of Health, Wadsworth Center-http://www.wadsworth.org/extramural/spinalcord/index.htm

In regards to my involvement in an attempt to restore funding to the New York State Spinal Cord Injury Research Program (SCIRP), which has had its funds (which it receives from moving traffic violation surcharges) reallocated to the state’s general fund.

The SCIRP legislation (below) allows for up to 8.5 million dollars to be deposited into the trust, but due to initial wording of the legislation, a minimum amount is not specified. In an effort to address the wording, I have met with NYS Senator John Bonacic and Assemblyman Kevin Cahill. With their help, we have been able to submit S 4934 / A 7478 (attached)which amends the previous legislation and calls for 5.6% of all moving traffic violations surcharges (151 million dollars) to be deposited into the SCIRP trust fund. This amendment provides vital flooring for funds not previously stated.

To rewind a little bit my involvement in all this started when I went with my family to the 2010 World Stem Cell Summit in Detroit Michigan where there were three days worth of presentations and exhibits. I had the opportunity to meet many fantastic scientists and researchers including Dr. Wise Young as well as an individual I had never been familiar with before. His name is Don Reed. Father of Roman Reed, founder of the Roman Reed Foundation and the Roman Reed Spinal Cord Injury Research Act. The California law imposes a similar surcharge on motor vehicle violations.

Meeting Dr, Wise Young

In my conversations with Don he recommended I reach out to Paul Richter, a former New York State Trooper who was shot and paralyzed. This man I would later find out to be the one behind the creation of the SCIRP legislation back in my home state in 1998.

Later on I followed up with Paul and learned about the problems the program has been facing since 2010 and I went on to pursue my local legislators.
And now I am outreaching to as many New Yorkers as I can to call for them to write to their State Senators and Assemblymen in support of S. 4934/A. 7478.
Feel free to contact me if you have any questions! I have attached the information I have regarding the program.

Chapter 338, Laws of 1998, as Amended by Chapter 612, Laws of 1999
5. Article VI of the state finance law is amended by adding a new section 99-f to read as follows:
§ 99-f. Spinal cord injury research trust fund.

  1. There is hereby established in the joint custody of the state comptroller and the commissioner of taxation and finance a special revenue fund to be known as the “spinal cord injury research trust fund.”
  2. The fund shall consist of all monies appropriated for its purpose, all monies required by this section or any other provision of law to be paid into or credited to such fund, and monies in an amount not to exceed eight million five hundred thousand dollars collected by the mandatory surcharges imposed pursuant to subdivision one of section eighteen hundred nine of the vehicle and traffic law. Nothing contained herein shall prevent the department of health from receiving grants, gifts or bequests for the purposes of the fund as defined in this section and depositing them into the fund according to law.
  3. Monies of the fund, when allocated, shall be available for administrative costs of the spinal cord injury research board established pursuant to title four of article two of the public health law and for funding spinal cord injury research projects administered by such board.
  4. Monies shall be payable from the fund on the audit and warrant of the state comptroller on vouchers approved and certified by the commissioner of health.

§ 6. This act shall take effect January 1, 1999

S. 4934

In addition to your district Senator and Assemblymen here are the heads of the committees in which S. 4934/A. 7478 currently sit.

In the Senate-finance committee, and in the Assembly-Ways and Means:

Senator John Defrancisnco (Finance Committee Chairman)
188 State Street
Albany Office
Legislative Office Building Room 416
Albany, NY 12247
518-455-3511

Senator Owen Johnson (Finance Committee Vice-Chairman)
Albany Office
188 State Street
Legislative Office Building Room 913
Albany, NY 12247
United States
518-455-3411

Assemblyman Herman Farrell (Ways and Means Chairman)
Albany Office
188 State Street
Legislative Office Building Room 923
Albany, NY 12248
518-455-5491

other key legislative contacts:

Assemblyman Sheldon Silver (Speaker of Assembly)
Albany Office
188 State Street
Legislative Office Building room 932
Albany, NY 12248
518-455-3791

Assemblyman Richard Gottfried (Chairman of Health Committee)
Albany Office
188 State Street
Legislative Office Building room 822
Albany, NY 12248
518-455-4941

Senator Dean Skelos (Senate Majority Leader)
Albany Office
188 State Street
Legislative Office Building, Room 909
Albany, NY 12247
United States
(518) 455-3171

Senator Kemp Hannon (Senate Health Committee)
Albany Office
The Capitol Room 420
Albany, NY 12247
United States
518-455-2200

committee members:

Finance committee members-
John A. DeFrancisco (Chairperson)
Owen H. Johnson (Vice Chairperson)
James S. Alesi
John J. Bonacic
Neil D. Breslin
John A. DeFrancisco
Ruben Diaz
Martin Malavé Dilan
Thomas K. Duane
Hugh T. Farley
John J. Flanagan
Charles J. Fuschillo Jr.
Michael Gianaris
Martin J. Golden
Joseph A. Griffo
Kemp Hannon
Liz Krueger
Andrew J Lanza
William J. Larkin Jr.
Kenneth P. LaValle
Betty Little
Carl L Marcellino
Velmanette Montgomery
Michael F. Nozzolio
Suzi Oppenheimer
Kevin S. Parker
José Peralta
Bill Perkins
Gustavo Rivera
Joseph E. Robach
Stephen M. Saland
James L. Seward
Daniel L. Squadron
Toby Ann Stavisky
Andrea Stewart-Cousins
Catharine Young

Ways and Means committee members-
Herman Farrell (Chairman)
Jeffrion Aubry
William Barclay
Philip Boyle
Daniel Burling
Kevin Cahill
Nancy Calhoun
William Colton
Vivian Cook
Jane Corwin
Clifford Crouch
Michael Cusick
Michael Fitzpatrick
David Gantt
Deborah Glick
Stephen Hawley
Carl Heastie
Earlene Hooper
Rhoda Jacobs
Tony Jordan
Joseph Lentol
John McEneny
Joseph Morelle
Catherine Nolan
Bob Oaks
Félix Ortiz
N. Nick Perry
J. Gary Pretlow
William Scarborough
Robin Schimminger
Fred Thiele, Jr.
Lou Tobacco
Helene Weinstein
Keith L.T. Wright

legislative letter heading format:

To the State Senate

The Honorable (Full Name)
State Capitol, (Room Number)
New York Senate
Albany, NY 12247

To the State Assembly

The Honorable (Full Name)
State Capitol, (Room Number)
New York Assembly
Albany, NY 12248

  • Be specific. Your purpose for writing should be stated in the first paragraph of the letter. If your letter pertains to a specific piece of legislation, be sure to identify its full name and number, e.g. Assembly Bill: A_____, Senate Bill: S_____. Try to send your letter while the issue is still alive.
  • State your position. Explain why you support or oppose this particular issue. Keep in mind that local examples concerning the impact of this legislation are very powerful. Be courteous and to the point, keeping your letter focused on one issue.
  • Ask for a response. Indicate to your legislator that you would appreciate a reply containing his/her position on the issue. “Sincerely yours” is a proper way to conclude your letter.
  • Follow up. If you agree with your legislator’s vote, take the time to let him/her know that. Similarly, if you disagree with his or her vote, inform your legislator.

source-http://www.congress.org/congressorg/dbq/issuesdbq/legisprotocol.dbq?command=write&state=NY

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