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NAEVR and ARVO Represented by Emerging Scientists at the Rally for Medical Research Advocacy Day 2015

September 18, 2015

NAEVR/ARVO representatives Adiv Johnson, Ph.D. (Mayo Clinic) and Joseph Brzezinski, Ph.D. (University of Colorado School of Medicine)
NAEVR/ARVO representatives Adiv Johnson, Ph.D. (Mayo Clinic) and Joseph Brzezinski, Ph.D. (University of Colorado
School of Medicine)
On September 17, NAEVR and ARVO co-sponsored and participated for the third year in the Rally for Medical Research Advocacy Day (see second box below for Rally history). ARVO members Joseph Brzezinski, Ph.D. (University of Colorado School of Medicine), a National Eye Institute (NEI) and Department of Defense (DOD)-funded researcher, participated for the first time, joining “veteran” advocate Adiv Johnson, Ph.D. (Mayo Clinic), who participated in 2014.

They were among the nearly 300 individuals from 40 different states and the District of Columbia who spent the day on Capitol Hill visiting more than 80 percent of the Senate offices and a third of the House offices to request that Congress provide robust, sustained, and predictable funding increases for the National Institutes of Health (NIH) for Fiscal Year (FY) 2016 and beyond. In addition to delegation visits, they also heard from key Congressional leaders and NIH Director Francis Collins, M.D., Ph.D. in preparatory events (see first box below).

The 300-plus advocates posed for an image prior to their Congressional delegation visits
The 300-plus advocates posed for an image prior to their Congressional delegation visits
NAEVR Executive Director James Jorkasky and ARVO Senior Manager, Science Communications Matt Windsor, Ph.D. participated and led the Minnesota delegation, which included Dr. Johnson and two oncology researchers: Douglas Yee, M.D. (University of Minnesota), who specializes in breast cancer, and Martin Fernandez-Zapico, M.D., (Mayo Clinic), who specializes in pancreatic cancer. In communicating the funding message, these researchers identified the basic science discoveries made possible through NIH support, such as the genetic basis of disease and understanding biological pathways, which are driving breakthroughs in a broad range of disease research. The Minnesota delegation met with two members of Congress: Cong. Tim Walz (D-MN), the highest ranking enlisted soldier to serve in the United States Congress, who pledged his support for robust NIH funding as well as for the $10 million Vision Research Program (VRP) funding line in DOD appropriations; and Cong. Keith Ellison (D-MN), a research supporter.

Cong. Tim Walz (D-MN), second left, with left to right: Douglas Yee, M.D. (University of Minnesota), Adiv Johnson, Ph.D. (Mayo Clinic), and Martin Fernandez-Zapico, M.D. (Mayo Clinic)
Cong. Tim Walz (D-MN), second left, with left to right: Douglas Yee, M.D. (University of Minnesota), Adiv Johnson, Ph.D. (Mayo Clinic), and Martin Fernandez-Zapico, M.D. (Mayo Clinic)
Cong. Keith Ellison (D-MN), second right, with left to right: ARVO’s Dr. Matt Windsor, Dr. Johnson, Dr. Fernandez-Zapico, and Dr. Yee
Cong. Keith Ellison (D-MN), second right, with left to right: ARVO’s Dr. Matt Windsor, Dr. Johnson, Dr. Fernandez-Zapico, and
Dr. Yee

A highlight of Dr. Brzezinski’s visits with the Colorado delegation was a meeting with staff of Cong. Diana DeGette (D-CO), the Ranking Member of the House Energy and Commerce (E&C) Committee’s Oversight and Investigations Subcommittee and lead co-sponsor with E&C Committee Chairman Fred Upton (R-MI) of the 21st Century Cures Act passed by the full House on July 10. This legislation authorizes $1.5 billion NIH increases per year for the next three fiscal years (2016-2018) and establishes a new NIH Innovation Fund which is funded at $1.75 billion per year for the next five fiscal years (2016-2020) through mandatory dollars. The staff discussed plans moving forward as the Senate Health, Education, Labor and Pensions (HELP) Committee drafts similar legislation.

Dr. Brzezinski offered the following insights from his day on Hill:

“From the events held prior to the visits, the most profound message was spoken by Dr. Collins, who said that ‘…Cures can’t wait…biomedical research can’t wait.’ This sense of urgency was shared by everyone in the room, and we brought this energy with us the following day in Congressional visits. It was clear from our meetings that Congress has heeded the call from Americans all over the country to support biomedical research. I encourage everyone to get involved since, for a modest investment of our time, we have the ability to effect changes that will improve the lives of Americans for decades to come.”
Dr. Johnson commented on his second year as a Rally advocate:
“Each staffer and Member was amiable and keen to hear about the economic, health, and ethical imperatives arguing for increased funding for the NIH and NEI. They seemed truly touched by a personal story I shared regarding a young patient I know with a currently untreatable, inherited retinal disorder. I am happy that I participated again this year and felt that my advocacy efforts made a meaningful impact. I encourage my colleagues to share their perspectives with policymakers.”

Senate Leaders, Dr. Collins Welcome Advocates;
Chairman Cole See Stars Aligned

Dr. Collins (center) with Dr. Johnson and Dr. Brzezinski
Dr. Collins (center) with Dr. Johnson and
Dr. Brzezinski
At a September 16 reception, NIH Director Dr. Collins spoke and thanked the advocates for their efforts prior to mingling with attendess. Key Senate leaders who spoke and provided encouragement to the advocates included: Senator Dick Durbin (D-IL), Assistant Senate Minority Leader and co-Chair of the Senate NIH Caucus; Senator Patty Murray (D-WA), Ranking Member of the Senate Labor, Health and Human Services, and Education (LHHS) Subcommittee and Ranking Member of the Senate HELP Committee; Senator Jerry Moran (R-KS), Senate LHHS Appropriations Subcommittee member; and Senator Amy Klobuchar (D-MN), a long-time leader in the Senate for increased NIH funding.

The next morning at a preparatory breakfast, House LHHS Appropriations Subcommittee Chair Tom Cole (R-OK) revved up the crowd when he stated that “the stars are aligned” to secure increased funding for the NIH and CDC… if Congress can coalesce around a real budget deal.”

Senator Amy Klobuchar (D-MN) and Senator Dick Durbin (D-IL) outside the reception
Senator Amy Klobuchar (D-MN) and Senator Dick Durbin (D-IL) outside the reception
LHHS Appropriations Subcommittee Chair Tom Cole (R-OK) speaking to advocates
LHHS Appropriations Subcommittee Chair Tom Cole (R-OK) speaking to advocates

NAEVR At Past Rally for Medical Research Activities

The Rally was held in Mount Vernon Square in front of the Washington D.C. Convention Center in the heart of the city. Several surrounding streets were closed to accommodate the crowd.
The Rally was held in Mount Vernon Square in front of the Washington D.C. Convention Center in the heart of the city. Several surrounding streets were closed to accommodate the crowd.
NAEVR participated in the first Rally for Medical Research, held on April 8, 2013, in Washington, D.C. in conjunction with the American Association for Cancer Research (AACR) annual meeting. With a theme of “More Progress, More Hope, More Life,” it attracted several thousand researchers and patient advocates from across the United States who called on Congress to stop cuts to medical research funding. Thousands more at academic institutions across the country watched the event, emailed letters to Congress, and used social media to spread awareness of the impact of funding cuts. Featured speakers included Cong. Rosa DeLauro (D-CT), the Ranking Member on the House Labor, Health and Human Services, and Education (LHHS) Appropriations Subcommittee-and an ovarian cancer survivor-and Cong. Chris Van Hollen, Ranking Member of the House Budget Committee who has the NIH campus located in his district.

NAEVR and ARVO participated in the first Rally for Medical Research Advocacy Day, held September 18, 2013, on Capitol Hill, and in that held on September 18, 2014. At the latter, NAEVR’s educational foundation AEVR coordinated release at the National Press Club in Washington, D.C. of its poll The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease and a new Vision and Blindness fact sheet, both developed with Research!America and supported by a grant from Research to Prevent Blindness. AEVR has also held its annual International Age-Related Macular Degeneration (AMD) Awareness Week Congressional Briefing in conjunction with all three Rally Advocacy Days.