On January 1, 2016 my sister, Sheri, started the new year with a devastating brain hemorrhage due to an AVM (arteriovenous malformation). The past two years have been challenging for her, to say the least. After surviving the hemorrhage and months of recovery, she can now eat, walk, and speak again. Things she had taken for granted before she now cherishes, such as the independence of driving. After everything Sheri had gone through she was determined to make a difference. She wanted to make people “THINK!”
After Sheri’s horrifying incident, our mother made an appointment with a neurologist. She had an MRI and it was discovered she had not one, but two, aneurysms. Luckily, the doctors caught them in time. They operated on one and they are just carefully watching the other. This potentially deadly condition was treated and, thankfully, there were no complications or deficits. Sheri’s AVM ruptured, but our mothers was detected and treated early. This intervention made all the difference in the world as she continues to live a normal life.
There is a significant need for education and research on this subject. If researchers could discover a genetic marker, develop medications, or find methods of early detection this could mean the difference between life and death for thousands of people.
As Sheri looked for answers she came across the Brain Aneurysm Foundation (BAF). Our first experience with the foundation was when we attended the first annual Brain Aneurysm Foundation Champion Awards benefit in Boston. At this event we met many wonderful survivors and families. They explained how they had recently lobbied on Capitol Hill for funds for research. That night both Sheri and I decided that we would go to the “the Hill” with the BAF in 2018.
On Sunday, March 18, we headed to the airport determined to make a difference. Sheri and I had never done anything like this before and we were excited. We had a story to tell and now we would get a chance to tell it. Hopefully decision-makers on Capitol Hill would listen and, in turn, support Ellie’s Law, which, if enacted, would allocate $5 million dollars a year for five years for brain aneurysm research.
On Monday, we went to the BAF’s pro bono government affairs firm Arnold & Porter building for our training. There were people from all over the country who explained Ellie’s Law and how it came to be. Members of The Bee Foundation spoke as well as those from the BAF. Dr. Christopher Ogilvy from the BAF educated us about aneurysms and the advancements that are being made. Then the attorneys explained what we would be doing on Capitol Hill, as well as what we would be asking for. We practiced what we were going to say, and at first it didn’t go very well. Upon returning to the hotel, Sheri and I rehearsed our stories and finally had them down pat.
On Tuesday morning, it was pouring rain, but we were excited nonetheless. We headed to the Hill, where we were scheduled to meet with six legislators in their offices (four representatives and two senators). We were impressed by the magnitude of the Capitol Building. I was nervous, but Sheri was very happy to be there and excited to tell her story.
We went to our first Congressman’s office and met with his assistant. Our group leader opened the conversation with who we were and why we were there. Sheri and the other survivor on our team told their stories. I explained Ellie’s Law and asked for the Congressman’s support of this bill, as well as support for establishing September as National Brain Aneurysm Awareness Month. Then our team leader closed the conversation. When we left that office, we were ecstatic; everyone had done a great job! After that first meeting we had confidence and went through all our remaining appointments with ease. It was a fun day spent with wonderful people. We left feeling like we truly made a difference. Events like this give a voice to survivors. With enough voices we can change the world.