I 

115TH CONGRESS 

1ST SESSION H. R. 1533 

To provide for further comprehensive research at the National Institute of 

Neurological Disorders and Stroke on unruptured intracranial aneurysms. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 15, 2017 

Ms. CLARKE of New York introduced the following bill; which was referred 

to the Committee on Energy and Commerce 

A BILL 

To provide for further comprehensive research at the National Institute of Neurological Disorders and Stroke 

on unruptured intracranial aneurysms. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Ellie Helton, Lisa 

5 Colagrossi, Teresa Anne Lawrence, and Jennifer Sedney 

6 Focused Research Act’’ or ‘‘Ellie’s Law’’. 

7 SEC. 2. FINDINGS. 

8 The Congress makes the following findings: 


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1 (1) An estimated 6 million people in the United 

2 States, or 1 in 50 people, have an unruptured brain 

3 aneurysm. 

4 (2) Each year, an estimated 30,000 people in 

5 the United States suffer a brain aneurysm rupture. 

6 Ruptured brain aneurysms are fatal in about 40 per7 cent of cases. Of those who survive, about 66 per8 cent suffer some permanent neurological deficit. 

9 (3) Brain aneurysms are more likely to occur in 

10 women than in men by a 3 to 2 ratio. People who 

11 experienced a brain aneurysm rupture include the 

12 following: 

13 (A) Ellie Helton. On July 16, 2014, Ellie 

14 Helton, a vibrant, loving 14-year-old from Apex, 

15 North Carolina, passed away as a result of a 

16 ruptured aneurysm, stunning her parents, two 

17 sisters, and many, many loved ones. A day ear18 lier, on her second day of high school, she woke 

19 up with a terrible headache after a plum-sized 

20 aneurysm on her brain stem ruptured. While 

21 she suffered headaches throughout her life, she 

22 was never diagnosed. Ellie was an avid reader 

23 and excellent student, loved the arts, and was 

24 incredibly creative. She had an unwavering, 


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1 constant love for the family and friends in her 

2 life. 

3 (B) Lisa Colagrossi. On March 20, 2015, 

4 Lisa Colagrossi—WABC Eyewitness News re5 porter, wife of 17 years, and mother of two 

6 sons—unexpectedly passed away at the age of 

7 49 years after suffering a massive ruptured 

8 brain aneurysm. Despite experiencing one of 

9 the classic warning signs of a brain aneurysm 

10 (the ‘‘worst headache of my life’’), Lisa’s pass11 ing came as a tremendous shock to her family 

12 and friends, who did not know what a brain an13 eurysm was, let alone its signs and symptoms. 

14 She is remembered for being a loving wife, a 

15 mother, and a successful reporter, and for her 

16 love of the New York Rangers. 

17 (C) Teresa Anne Lawrence, devoted moth18 er of three, beloved wife, and staple of her com19 munity, collapsed while visiting her son’s school 

20 on December 8, 1983. She had been struggling 

21 with and taking medication for hypertension for 

22 several years. At age 34, after being uncon23 scious for four days, she passed away as a re24 sult of a brain aneurysm. Her loving husband 


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1 and extended family were left to raise their chil2 dren, whom Teresa cherished so much. 

3 (D) Jennifer Sedney. On December 25, 

4 2013, Jennifer Sedney, a beautiful, accom5 plished young woman, passed away suddenly at 

6 the age of 27 from a ruptured brain aneurysm. 

7 Her only symptom was the ‘‘worst headache of 

8 her life’’, which none of her friends or family 

9 realized was a symptom of a potentially fatal 

10 condition. Jenny was a jogger, a disciplined ex11 erciser, and a successful health care consultant 

12 and had recently launched a health blog found13 ed on three principles—‘‘bee curious, bee radi14 ant, bee well’’. Her brother, mother, father, and 

15 a large devoted network of friends and relatives 

16 remember her every day. 

17 (4) The combined lost wages of survivors of 

18 brain aneurysm ruptures and their caretakers are 

19 approximately $138,000,000 per year. 

20 (5) Despite the widespread prevalence of this 

21 condition and the high societal cost it imposes on the 

22 Nation, the Federal Government only spends ap23 proximately $0.83 per year on brain aneurysm re24 search for each person afflicted with a brain aneu25 rysm. 


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1 (6) The first three iterations of the Inter2 national Study on Unruptured Intracranial Aneu3 rysms (ISUIA) have advanced researchers’ and clini4 cians’ understanding of how to most effectively man5 age and treat unruptured intracranial aneurysms. 

6 SEC. 3. FUNDING. 

7 (a) AUTHORIZATION OF APPROPRIATIONS.—To con8 duct or support further comprehensive research on 

9 unruptured intracranial aneurysms, studying a broader 

10 patient population diversified by age, sex, and race, there 

11 are authorized to be appropriated to the National Institute 

12 of Neurological Disorders and Stroke $5,000,000 for each 

13 of fiscal years 2018 through 2022, to remain available 

14 through September 30, 2026. 

15 (b) SUPPLEMENT, NOT SUPPLANT.—Any funds 

16 made available pursuant to this section shall supplement, 

17 not supplant, other funding made available for research 

18 on brain aneurysms. 

Æ 


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