Ellie’s Law is expected to be reintroduced in the 118th Thursday, Feb 9th, by Reps. Clarke, Fitzpatrick, Scanlon and Rutherford along with at least 8 original cosponsors!
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.
The bill 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. Ellie’s parents are 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.
The cost of losing lives to brain aneurysms is real and measurable – around $138 million per year. After a huge lobbying effort, supported by Arnold and Porter LLP, HR Bill No. 6185, the bill was introduced with 14 original cosponsors, up from 3 original cosponsors in the 117th session.
The leads on Ellie’s Law are: Reps. Yvette Clarke (D-NY), Brian Fitzpatrick (R-PA), Mary Gay Scanlon (D-PA), and John Rutherford (R-FL).
In 2014, 14-year-old Ellie Helton was taken so tragically far before her time by a ruptured aneurysm.
This Congress, I’m honored to introduce bipartisan legislation named in her memory to provide researchers the resources they need to end brain aneurysms — once and for all. pic.twitter.com/wLptWNHGEK
— Yvette D. Clarke (@RepYvetteClarke) February 10, 2023
The other original cosponsors in the 118th are: Reps. Paul Tonko (D-NY), Stephen Lynch (D-MA), Troy Carter (D-LA), David Trone (D-MD), Suzan DelBene (D-WA), Mark Pocan (D-WI), Sean Casten (D-IL), Ann Kuster (D-NH), Madeleine Dean (D-PA), Lisa Blunt Rochester (D-DE), and Eleanor Holmes Norton (D-DC).
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.”
With sufficient support in Congress, we can make federal funding for brain aneurysm research a reality.