Written by Katie Deinert
One in 50 people are in danger of suffering a ruptured brain aneurysm. Forty percent of those who do experience a rupture are likely to die. Awareness and research for this deadly condition needs to be an important item on the federal agenda. The cost of losing lives to brain aneurysms is real and measurable – around $138 million per year. After a huge lobbying effort by The Bee Foundation and The Brain Aneurysm Foundation, supported by Arnold and Porter LLP, HR Bill No. 6185, sponsored by Representative Yvette Clarke (D-NY) and Representative Renee Ellmers (R-NC), is being reviewed by the House of Representatives. The Bill calls for the authorization of $5 million per fiscal year from 2017 to 2021 to the National Institute of Neurological Disorders and Stroke. The funds will be available until 2025 to enhance comprehensive research on unruptured intracranial aneurysms.
HR Bill No. 6185 has been nicknamed Ellie’s Law, in remembrance of Ellie Helton. On July 16, 2014, Ellie, a vibrant, loving 14-year-old from Apex, North Carolina, passed away as a result of a ruptured aneurysm. Her parents, two sisters, and many, many loved ones were stunned. A day earlier, on her second day of high school, she woke up with a terrible headache after a plum-sized aneurysm on her brain stem ruptured. Ellie’s parents were top advocates for the legislation.
Also named in the bill is Jennifer Sedney, a beautiful, accomplished young woman for whom The Bee Foundation was founded. Jennifer passed away on December 25, 2013 at the age of 27 from a ruptured brain aneurysm. All advocating parties have lost a loved one to a ruptured brain aneurysm. Lisa Colagrossi, former WABC Eyewitness News Reporter, wife of 17 years, and mother of two sons, lost her life on March 20, 2015. Teresa Anne Lawrence, devoted mother of three, beloved wife, and staple of her community, collapsed while visiting her son’s school on December 8, 1983. Both Lisa and Teresa are named in the Bill as well.
Here is where we need your help:
We need to gain further support in the form of additional cosponsors so we can get the bill signed into law. Please call your representative’s DC office, ask to speak with their healthcare staffer, and urge them to sign on as a cosponsor to Ellie’s Law (H.R. 6185) (we will be working with Senators to see Ellie’s law introduced there as well).
To be directed to your representative’s office, you can call the House switchboard operator: (202) 225-3121
If you need to look up your representative’s name, you can find it by searching with your zip code here: http://www.house.gov/representatives/find/
Make your voice heard! Here are some key points we recommend to help the staffer understand the importance:
- Tell them why this is important to you as a constituent.
- An estimated 6 million people in the United States have an unruptured brain aneurysm, or 1 in 50 people.
- The combined lost wages of survivors of brain aneurysm ruptures and their caretakers are approximately $138 million per year.
- Despite the widespread prevalence of this condition and the high societal cost it imposes on the Nation, the Federal Government only spends approximately $0.83 per year on brain aneurysm research for each person afflicted with a brain aneurysm.
Dr. J Mocco, Chief Medical Officer of The Bee Foundation, commented on the importance of Ellie’s Law: “The Brain Aneurysm Authorization bill represents a tremendous step in the long term, genuine commitment to the discovery of new knowledge in the treatment of this devastating disease that typically strikes patients in the prime of their lives. It demonstrates the importance of the mission of The Bee Foundation, a preventative brain aneurysm research organization inspired by the loss of Jennifer Sedney, who died on Christmas Day 2013 at the age of 27 and is named in Ellie’s Law.”
Founded in May 2014, The Bee Foundation is a Philadelphia-based 501(c)(3) organization dedicated to raising awareness and reducing the number of deaths caused by brain aneurysms through innovative research. For further information, contact us at [email protected]g.