Title: Ellie’s Law
Policy area: Health

Summary:
Ellie Helton, Lisa Colagrossi, Teresa Anne Lawrence, and Jennifer Sedney Focused Research Act or Ellie's Law

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 864 Introduced in Senate (IS)]

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116th CONGRESS
  1st Session
                                 S. 864

To provide for further comprehensive research at the National Institute 
    of Neurological Disorders and Stroke on unruptured intracranial 
                               aneurysms.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             March 25, 2019

Mr. Blumenthal introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To provide for further comprehensive research at the National Institute 
    of Neurological Disorders and Stroke on unruptured intracranial 
                               aneurysms.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Ellie Helton, Lisa Colagrossi, 
Teresa Anne Lawrence, and Jennifer Sedney Focused Research Act'' or 
``Ellie's Law''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) An estimated 6,000,000 people in the United States, or 
        1 in 50 people, have an unruptured brain aneurysm.
            (2) Each year, an estimated 30,000 people in the United 
        States suffer a brain aneurysm rupture. Ruptured brain 
        aneurysms are fatal in about 40 percent of cases. Of those who 
        survive, about 66 percent suffer some permanent neurological 
        deficit.
            (3) Brain aneurysms are more likely to occur in women than 
        in men by a 3 to 2 ratio. People who experienced a brain 
        aneurysm rupture include the following:
                    (A) Ellie Helton. On July 16, 2014, Ellie Helton, a 
                vibrant, loving 14-year-old from Apex, North Carolina, 
                passed away as a result of a ruptured aneurysm, 
                stunning her parents, 2 sisters, and many, many loved 
                ones. 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. While she suffered 
                headaches throughout her life, she was never diagnosed. 
                Ellie was an avid reader and excellent student, loved 
                the arts, and was incredibly creative. She had an 
                unwavering, constant love for the family and friends in 
                her life.
                    (B) Lisa Colagrossi. On March 20, 2015, Lisa 
                Colagrossi--WABC Eyewitness News reporter, wife of 17 
                years, and mother of 2 sons--unexpectedly passed away 
                at the age of 49 years after suffering a massive 
                ruptured brain aneurysm. Despite experiencing one of 
                the classic warning signs of a brain aneurysm (the 
                ``worst headache of my life''), Lisa's passing came as 
                a tremendous shock to her family and friends, who did 
                not know what a brain aneurysm was, let alone its signs 
                and symptoms. She is remembered for being a loving 
                wife, a mother, and a successful reporter, and for her 
                love of the New York Rangers.
                    (C) Teresa Anne Lawrence, devoted mother of 3, 
                beloved wife, and staple of her community, collapsed 
                while visiting her son's school on December 8, 1983. 
                She had been struggling with and taking medication for 
                hypertension for several years. At age 34, after being 
                unconscious for 4 days, she passed away as a result of 
                a brain aneurysm. Her loving husband and extended 
                family were left to raise their children, whom Teresa 
                cherished so much.
                    (D) Jennifer Sedney. On December 25, 2013, Jennifer 
                Sedney, a beautiful, accomplished young woman, passed 
                away suddenly at the age of 27 from a ruptured brain 
                aneurysm. Her only symptom was the ``worst headache of 
                her life'', which none of her friends or family 
                realized was a symptom of a potentially fatal 
                condition. Jenny was a jogger, a disciplined exerciser, 
                and a successful health care consultant and had 
                recently launched a health blog founded on 3 
                principles--``bee curious, bee radiant, bee well''. Her 
                brother, mother, father, and a large devoted network of 
                friends and relatives remember her every day.
            (4) The combined lost wages of survivors of brain aneurysm 
        ruptures and their caretakers are approximately $138,000,000 
        per year.
            (5) Despite the widespread prevalence of this condition and 
        the high societal cost it imposes on the Nation, the Federal 
        Government spends only approximately $0.83 per year on brain 
        aneurysm research for each person afflicted with a brain 
        aneurysm.
            (6) The first 3 iterations of the International Study on 
        Unruptured Intracranial Aneurysms (ISUIA) have advanced 
        researchers' and clinicians' understanding of how to most 
        effectively manage and treat unruptured intracranial aneurysms.

SEC. 3. FUNDING.

    (a) Authorization of Appropriations.--To conduct or support further 
comprehensive research on unruptured intracranial aneurysms, studying a 
broader patient population diversified by age, sex, and race, there is 
authorized to be appropriated to the National Institute of Neurological 
Disorders and Stroke $5,000,000 for each of fiscal years 2020 through 
2024, to remain available through September 30, 2027.
    (b) Supplement, Not Supplant.--Any funds made available pursuant to 
this section shall supplement, not supplant, other funding made 
available for research on brain aneurysms.
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