I 

117TH CONGRESS 

1ST SESSION H. R. 1553 

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 3, 2021 

Ms. CLARKE of New York (for herself, Mr. FITZPATRICK, Ms. SCANLON, and 

Mr. STIVERS) 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, Kristen Shafer Englert, Teresa Anne Law6 rence, and Jennifer Sedney Focused Research Act’’ or 

7 ‘‘Ellie’s Law’’. 

8 SEC. 2. FINDINGS. 

9 The Congress makes the following findings: 


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1 (1) An estimated 6.5 million people in the 

2 United States, or 1 in 50 people, have an 

3 unruptured brain 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 50 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. This Act rep11 resents all those who have been affected and died 

12 due to a ruptured brain aneurysm, and their loved 

13 ones. People who experienced a brain aneurysm rup14 ture include the following: 

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

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

17 North Carolina, passed away as a result of a 

18 ruptured aneurysm, stunning her parents, two 

19 sisters, and many, many loved ones. A day ear20 lier, on her second day of high school, she woke 

21 up with a terrible headache after a plum-sized 

22 aneurysm on her brain stem ruptured. While 

23 she suffered headaches throughout her life, she 

24 was never diagnosed. Ellie was an avid reader 

25 and excellent student, loved the arts, and was 


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1 incredibly creative. She had an unwavering, 

2 constant love for the family and friends in her 

3 life. 

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

5 Lisa Colagrossi—WABC Eyewitness News re6 porter, wife of 17 years, and mother of two 

7 sons—unexpectedly passed away at the age of 

8 49 years after suffering a massive ruptured 

9 brain aneurysm. Despite experiencing one of 

10 the classic warning signs of a brain aneurysm 

11 (the ‘‘worst headache of my life’’), Lisa’s pass12 ing came as a tremendous shock to her family 

13 and friends, who did not know what a brain an14 eurysm was, let alone its signs and symptoms. 

15 She is remembered for being a loving wife, a 

16 mother, and a successful reporter, and for her 

17 love of the New York Rangers. 

18 (C) Kristen Shafer Englert. On November 

19 24, 2013, Kristen Shafer Englert, a devoted 

20 wife, mother, daughter, sister, aunt, and friend, 

21 passed away from a ruptured brain aneurysm 

22 at the age of 25, just weeks after giving birth 

23 to her son. Prior to her passing, she went to the 

24 emergency room with symptoms of a brain an25 eurysm and was sent home without a scan. 


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1 Kristen was a dedicated teacher who loved chil2 dren. She was thrilled to become a mother. 

3 Sadly, she only experienced motherhood for a 

4 few short days. Kristen’s family members have 

5 been dedicated advocates since her passing. 

6 (D) Teresa Anne Lawrence. On December 

7 8, 1983, Teresa Anne Lawrence,a devoted 

8 mother of three, beloved wife, and staple of her 

9 community, collapsed while visiting her son’s 

10 school. She had been struggling with and taking 

11 medication for hypertension for several years. 

12 At age 34, after being unconscious for four 

13 days, she passed away as a result of a brain an14 eurysm. Her loving husband and extended fam15 ily were left to raise their children, whom Te16 resa cherished so much. 

17 (E) Jennifer Sedney. On December 25, 

18 2013, Jennifer Sedney, a beautiful, accom19 plished young woman, passed away suddenly at 

20 the age of 27 from a ruptured brain aneurysm. 

21 Her only symptom was the ‘‘worst headache of 

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

23 realized was a symptom of a potentially fatal 

24 condition. Jenny was a jogger, a disciplined ex25 erciser, and a successful health care consultant 


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1 and had recently launched a health blog found2 ed on three principles—‘‘bee curious, bee radi3 ant, bee well’’. Her brother, mother, and father, 

4 and a large devoted network of friends and rel5 atives, remember her every day. 

6 (4) Brain aneurysm ruptures have a significant 

7 fiscal impact on survivors, caretakers, and the health 

8 care community. The annual estimated pre-insur9 ance direct cost of brain aneurysm ruptures to 

10 American patients is approximately $1,400,000,000, 

11 and the estimated direct cost to hospitals each year 

12 is approximately $2,700,000,000. The length of stay 

13 in the intensive care unit is the largest driver of cost 

14 for brain aneurysm ruptures, and estimates do not 

15 reflect indirect costs including travel, food, childcare, 

16 and wage losses for patients and caretakers. 

17 (5) Despite the widespread prevalence of this 

18 condition and the high societal cost it imposes on the 

19 Nation, the Federal Government only spends ap20 proximately $2.08 per year on brain aneurysm re21 search for each person afflicted with a brain aneu22 rysm. 

23 (6) The first three iterations of the Inter24 national Study on Unruptured Intracranial Aneu25 rysms (ISUIA) have advanced researchers’ and cliniVerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553

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1 cians’ understanding of how to most effectively man2 age and treat unruptured intracranial aneurysms. 

3 SEC. 3. FUNDING. 

4 (a) AUTHORIZATION OF APPROPRIATIONS.—To con5 duct or support further comprehensive research on 

6 unruptured intracranial aneurysms, studying a broader 

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

8 is authorized to be appropriated to the National Institute 

9 of Neurological Disorders and Stroke $10,000,000 for 

10 each of fiscal years 2022 through 2026, to remain avail11 able through September 30, 2029. 

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

13 made available pursuant to this section shall supplement, 

14 not supplant, other funding made available for research 

15 on brain aneurysms. 

Æ 


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