I 117th CONGRESS 1st Session H. R. 1553 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. Short title This Act may be cited as the Ellie Helton, Lisa Colagrossi, Kristen Shafer Englert, Teresa Anne Lawrence, and Jennifer Sedney Focused Research Act or Ellie’s Law . 2. Findings The Congress makes the following findings: (1) An estimated 6.5 million 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 50 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. This Act represents all those who have been affected and died due to a ruptured brain aneurysm, and their loved ones. 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, two 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 two 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) Kristen Shafer Englert. On November 24, 2013, Kristen Shafer Englert, a devoted wife, mother, daughter, sister, aunt, and friend, passed away from a ruptured brain aneurysm at the age of 25, just weeks after giving birth to her son. Prior to her passing, she went to the emergency room with symptoms of a brain aneurysm and was sent home without a scan. Kristen was a dedicated teacher who loved children. She was thrilled to become a mother. Sadly, she only experienced motherhood for a few short days. Kristen’s family members have been dedicated advocates since her passing. (D) Teresa Anne Lawrence. On December 8, 1983, Teresa Anne Lawrence,a devoted mother of three, beloved wife, and staple of her community, collapsed while visiting her son's school. She had been struggling with and taking medication for hypertension for several years. At age 34, after being unconscious for four 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. (E) 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 three principles— bee curious, bee radiant, bee well . Her brother, mother, and father, and a large devoted network of friends and relatives, remember her every day. (4) Brain aneurysm ruptures have a significant fiscal impact on survivors, caretakers, and the health care community. The annual estimated pre-insurance direct cost of brain aneurysm ruptures to American patients is approximately $1,400,000,000, and the estimated direct cost to hospitals each year is approximately $2,700,000,000. The length of stay in the intensive care unit is the largest driver of cost for brain aneurysm ruptures, and estimates do not reflect indirect costs including travel, food, childcare, and wage losses for patients and caretakers. (5) Despite the widespread prevalence of this condition and the high societal cost it imposes on the Nation, the Federal Government only spends approximately $2.08 per year on brain aneurysm research for each person afflicted with a brain aneurysm. (6) The first three 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. 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 $10,000,000 for each of fiscal years 2022 through 2026, to remain available through September 30, 2029. (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.