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NAEVR and ARVO Participate in the Fourth Annual Rally for Medical Research Advocacy Day As NAEVR Hosts Clinician-Scientist Researching Retinal Regeneration

NAEVR co-hosted the Texas delegation, which included retinal regeneration researcher Sai Chavala, M.D. (University of North Texas Health Science Center), right, bone researcher Babatunde Oyajobi, Ph.D. (University of Texas Health Science Center at San Antonio) representing the American Society for Bone and Mineral Research, left, and Lisa Hall, patient advocate for the Pulmonary Fibrosis Foundation, center
NAEVR co-hosted the Texas delegation, which included retinal regeneration researcher Sai Chavala, M.D. (University of North Texas Health Science Center), right, bone researcher Babatunde Oyajobi, Ph.D. (University of Texas Health Science Center at San Antonio) representing the American Society for Bone and Mineral Research, left, and Lisa Hall, patient advocate for the Pulmonary Fibrosis Foundation, center
On September 21 and just a week after NAEVR hosted 22 Emerging Vision Scientists in Capitol Hill visits, NAEVR and ARVO co-sponsored and participated in the fourth annual Rally for Medical Research Advocacy Day (see box below for Rally history). NAEVR hosted clinician-scientist Sai Chavala, M.D. (University of North Texas Health Science Center), who is a National Eye Institute (NEI)-funded investigator into retinal regeneration. NAEVR’s James Jorkasky co-hosted the Texas delegation, while NAEVR’s David Epstein co-hosted the California delegation and ARVO’s Matt Windsor, Ph.D. co-hosted the Wisconsin delegation.

The largest and most diverse group of Rally advocates yet, the nearly 350 participants from more than 125 different organizations came together from 37 states and the District of Columbia to make more than 250 visits with Congressional offices. Researchers described their breakthroughs, while patient advocates emphasized how this emerging research is saving lives and improving the quality of life. Consistent with NAEVR’s prior message, advocates urged that Congress enact a short-term Continuing Resolution (CR) to keep the government funded with the start of Fiscal Year (FY) 2017 on October 1, and after the election recess finalize FY2017 appropriations before year’s end to include the $2 billion NIH increase, as proposed by the Senate Appropriations Committee.

In discussions, the advocates stressed that “research does not take a pause” and that a lengthy CR would impede progress, since under a CR NIH cannot spend in any one month more than it did in the same month the previous fiscal year. As a result, grants may be approved but not funded, jeopardizing labs and their employees. In some cases, investigators may require bridge funding from private funding foundations or institution philanthropic funding to continue the momentum of research and retain trained personnel.

Dr. Chavala commented on his participation as a Rally advocate:

“I shared with staff that I did not initially intend to become a researcher, but in my clinical practice I saw patients who were going blind from retinal degeneration—including many elderly patients who had just retired and wanted to enjoy their free time. Frustrated, I wanted to do more to help these patients and decided to begin my research into retinal regeneration. Federal funding support through the NIH and NEI is vital to my work, and I wanted to do my part in expressing to the Texas delegation Members that robust, sustained, and predictable funding increases are necessary for the NIH/NEI. I enjoyed advocating with my colleagues and thank NAEVR for hosting me at this important event, which enabled me to see how important it is for scientists to educate policymakers about the impact of their research on patients.”

George Leonardo, office of Senator John Cornyn (R-TX), second left, with (from left) Dr. Oyajobi, Ms. Hall, and Dr. Chavala
George Leonardo, office of Senator John Cornyn (R-TX), second left, with (from left) Dr. Oyajobi, Ms. Hall, and Dr. Chavala
Emily Erb, office of Cong. Pete Sessions (R-TX), left, discusses with the group the Congressman’s support for medical research—especially that into retinal regeneration. In 2009, Cong. Sessions was a co-sponsor with then-Cong. Tammy Baldwin (now a Wisconsin Senator) of H. Res. 366 which designated 2010-2020 as “The Decade of Vision”
Emily Erb, office of Cong. Pete Sessions (R-TX), left, discusses with the group the Congressman’s support for medical research—especially that into retinal regeneration. In 2009, Cong. Sessions was a co-sponsor with then-Cong. Tammy Baldwin (now a Wisconsin Senator) of H. Res. 366 which designated 2010-2020 as “The
Decade of Vision”
NAEVR At Past Rally for Medical Research Activities

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.

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 and ARVO participated in the first Rally Advocacy Day, held September 18, 2013. In conjunction with the September 18, 2014 Rally Advocacy Day, 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. In conjunction with the September 17, 2015, Rally Advocacy Day, AEVR held its annual International Age-Related Macular Degeneration (AMD) Awareness Week Congressional Briefing.