Research Dollars 2017

Today I sent the following to Senator Bob Casey, Senator Pat Toomey and Congressman Tim Murphey:

As one of your constituents, District Activist Leader for the National Multiple Sclerosis Society and Consumer Reviewer for the Congressionally Directed Medical Research Program’s (CDMRP) Multiple Sclerosis Research Program (MSRP, Congress must pass final appropriations bills for fiscal year (FY) 2017 to avoid a continuing resolution (CR) that will endanger research funding and the future of medical progress for chronic diseases like MS.

Each appropriations cycle is an opportunity for Congress to adjust spending priorities and reevaluate the needs of our nation. A long-term (more than 3 months) CR would have dangerous effects on all areas of research and further extend the time that people with MS will wait for new therapies and treatments. A Continuing Resolution extending current FY16 funding levels will effectively “flat-fund” research and prevent innovative research from being funded through the MS Congressionally Directed Medical Research Program (CDMRP)..

“Flat-funding” actually results in a net decrease in the research accomplished by appropriated dollars as the cost of doing research rises each year.  Congress should robustly fund medical research funding for MS, specifically the NIH and the MS Congressionally Directed Medical Research Program.

Sincerely

Senator Bob Casey, August Recess Visit to Pittsburgh, PA Office

Senator Bob Casey

August Recess Visit

September 7, 2016

          

Attendees:

Jordan Ball, Regional Representative, Senator Casey’s Pittsburgh office

Brian Sibenac, Constituent & PA Keystone Chapter, National MS Society

Frank Austin, Constituent, District Activist Leader, Member PA GRC

Brian & I met with Mr. Jordan Ball at 11:00 AM September 7, 2016 in Senator Casey’s Pittsburgh office. While I wasn’t able to schedule a visit during the actual August Recess I was able to schedule a meeting immediately after the Senate was back in session.

The items we brought forward at the meeting were:

·         We first thanked Senator Casey for being a champion for the cause, for his leadership and support for the National Multiple Sclerosis Society’s legislative priorities.

·         Advancing Research for Neurological Diseases Act. We stressed the fact that the last time a study of the prevalence and occurrence of MS was conducted in the United States was in the mid-1970s.

·         National Institutes of Health (NIH) Funding. We stated the Society’s desire to see $34.1B appropriated for the NIH in the final FY 2017 spending bill. The MS Society’s contribution to MS research and the research dollars directed to MS within NIH programs was also noted.

·         Congressionally Directed Medical Research Program (CDMRP). We emphasized the increase in incidence of MS in veterans of the Vietnam conflict, the first Gulf War and the exponential increase in MS cases diagnosed among Kuwaiti Nationals. We stated the Society’s desire to see $6M appropriated for MS research in the CDMRP in the final FY 2017 spending bill.

·         The conversation was wide ranging. Mr. Ball acknowledged that he had no direct connection to MS, had no knowledge of friends or acquaintances living with MS and had very little personal knowledge of the disease. He expressed that our meeting had been an educational experience for him.

Jordan wanted to make sure we were aware that Senator Casey’s Washington, D.C. Legislative Assistant for Health issues was Ms. Sara Mabry and we confirmed to him that we had had previous opportunities to interface positively with Sara.

Jordan will also be sending Brian and me information regarding grants that might be of benefit. He also offered local staff assistance applying for these grants.

Our leave behind included:

• Neurological Data Issue Brief
• MS Congressionally Directed Medical Research Program Issue Brief
• National Institutes of Health Issue Brief

·         A copy of, “Momentum” that focused on the Society’s advocacy efforts and the Public Policy Conference.

Frank Austin

56 Hennig Drive

Pittsburgh, PA 15236

f.frank.austin@gmail.com