WOW!!! What a great experience, to make your presence known in Washington DC!
Each year, One Voice Against Cancer (OVAC) organizes a lobby day to urge Congress to support funding for cancer research, prevention and education through the National Institutes of Health (NIH), National Cancer Institute (NCI) and Centers for Disease Control (CDC). OVAC is a coalition of some 46 cancer-related organizations, of which the Life Raft Group is a member.
I headed to Crystal City, where the OVAC meeting was being held on Sunday, May 8, 2016. This was my second year attending. On Monday morning, I met up with Marisa Bolognese, Deputy Executive Director of LRG; fellow GISTer Jeannie Dennis and her daughter, Kristen Dennis. It was great to be able to sit down and visit with them again and catch up on what has been happening with each of us since I last saw them. Jeannie and Kristen were back for the second time too.
We spent Monday afternoon in training — hearing about the “ask” we were to make and a little about the atmosphere on the Hill. In the late afternoon, we met up with others from the state we represented. Iowa had three other people, although we just represented two congressional districts.
Early Tuesday morning, we were taken to the Hill. As Iowa had no morning appointments, we were able to do some sightseeing and visited the offices of the two representatives who weren’t from our districts. We left them a packet with the information we wanted them to consider. The more people that hear about this, the better the chance of support of our ask.
Our afternoon was spent meeting with a staffer from District 2, Rep. David Young from my District 3, a staffer from Sen. Joni Ernst’s office and with Sen. Chuck Grassley. We each told our own personal stories about why we were there. We discussed the importance of funding the NIH, NCI and CDC so they can do more research, keep their prevention programs going and educate the public on cancer-related topics. We urged them all to support the Cancer Moonshot Initiative.
I felt that each office was concerned about the topics, and three of the four committed to supporting the ASK we had made. This funding will not be used specifically for GIST research — but Gleevec was not originally manufactured for GIST either, and it works for us! Hopefully, something else will be discovered that will help GIST patients, especially those for whom there is no effective targeted treatment.
I found the OVAC Lobby Day to be a very rewarding adventure. I was able to talk about GIST and the importance of research to this rare cancer. I was able to convey that, even though there is a treatment for some of us, there is not one for all of us, so more needs to be done. Stories like ours, along with those that involve children, seem to make the biggest impressions on the people we met. I will keep in touch with my representative and both senators throughout the year and I hope to be back in Washington for next year’s OVAC Lobby Day. Each of you should consider attending too. If you do, I do not think you will regret your decision.
We all can continue to advocate for GIST throughout the year. For more information on how to do so, please contact Laura Occhiuzzi, Assistant Program Director: locchiuzzi@liferaftgroup.org.
