b'It wiped out her AML in a matter of days and(Some people have working legs; others of with negligible side effects. Other partici- us heads of hair.), the fashionability of her pantsthough not allhave experienced thelife-alert necklace, the ins and outs of a Hoyer same results. If a larger trial now underwaylift and a pulmonary function test, and the shows similar outcomes, FDA approval foracquisition by parents Ginny and Cliff of a younger patients could come in a couple ofwheelchair van, among many others. years, Pollyea says.Eby did her first video in July 2022. She had Lindley then joined a second clinical trialbeen diagnosed that March, three years led by Pollyeas colleague Jonathan Gutman,after colleagues at Salesforce, where she still M.D. He was testing a combination of donorworks in partnerships, noticed a limp. The idea cells and umbilical cord blood to speed upwas to show people firsthand that there are the recovery of blood cell counts after aexceptions to the rule that ALS, an incurable stem cell transplant. Lindley says its theneurological disease which leads to progres-toughest thing shes ever been through, andsive paralysis, affects mostly older men. She thats saying something. also found doing the videos psychologically Five years later, she is in complete remission,therapeutic, which is nontrivial when just 10% and she has added to her long list of activitiesof those with ALS live more than eight years being a high-profile advocate for national leg- after diagnosis. islation (H.R. 3503) to ensure that all patientsHer motivations have evolved. Ebys goal have access to cutting-edge clinical trials,now is to help raise awareness and money regardless of where they live. to advance the development of therapies I am alive today thanks to two clinical trialsto get at the root of ALSs causes and that saved my life, Lindley says. It is soeither stop it from manifesting or reverse important that we continue to support theseits course. The seven FDA-approved treat-breakthrough technologies and treatments,ments available today can only delay the as they will be where cures are found andinevitable and manage symptoms. Shes lives are saved. I will do everything in mybeen on an experimental therapy through Brooke Eby raises awareness and funds topower to raise awareness of the importanceexpanded access.advance the development of therapies thatof supporting this work so others like me can address the root cause of ALS. She has raised more than $1 million and continue to live this miracle of life despite acounting. But her efforts are about more than dire diagnosis. writing checks. She brings different perspec-tives from her experiences at a major global The techBrooke Eby technology company and encourages the Advocates for Researchthe research community to consider diverse culture movesFunding on Social Media perspectives and look for new approaches from different industries. so quickly.Brooke Ebys openness, sense of humor, andThe tech culture moves so quickly, Eby says. utter lack of self-pity leaves viewers wishing How can wefor a cure for her incurable disease if only toHow can we translate this to the science save this one compelling person. It adds upworld? And maybe we cant, but there are translate thisto a lot of wishing: Eby, a.k.a. limpbroozkit,certain things I think we can do knowledge has 167,000 TikTok and 123,000 Instagramtransfer on.to the sciencefollowers talking in short videos about life as aThat understanding, she hopes, will boost young, female person with amyotrophic lateral world? sclerosis (ALS). momentum toward an ALS cure that has proven evasive for so longand, ideally, one BROOKE EBY The topics are diverse: a morning with herthat would keep limpbroozkit rolling for years ALS PATIENT AND ADVOCATE first cold since ALS (it hit hard), a hair tutorialto come.24 BIOSCIENCE COLORADO 2024-2025'