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Pete Frates, Who Helped Raise Millions For ALS Research, Dies At 34

Pete Frates, Who Helped Raise Millions For ALS Research, Dies At 34 Pete Frates, a college baseball player who was diagnosed with ALS and then helped to raise millions of dollars for research into the disease, died Monday at age 34. Pete Frates, a college baseball player who was diagnosed with ALS and then helped to raise millions of dollars for research into the disease, died Monday at age 34. At the root of the campaign was Peter Frates, a former Boston College baseball player who was diagnosed with ALS when he was 27. Pete Frates played sports his entire life; he knew how to give a pep talk. UNIDENTIFIED PERSON: It is especially important to us, given our close friendship with Pete Frates, the man who is battling ALS right now…. LIMBONG: To celebrities on TV. JIMMY FALLON: I’m Jimmy Fallon. BILL GATES: I’m here to join the people bringing attention to Lou Gehrig’s disease by taking the ALS Ice Bucket Challenge. LIMBONG: Pete Frates didn’t invent the act of dumping cold water on your head for a charity, but he was the reason it spread so rapidly. Brian Frederick is an executive vice president at the ALS Association in Washington, D.C. BRIAN FREDERICK: Prior to the Ice Bucket Challenge, the only folks that really donated to ALS were folks who had a direct connection to the disease – they had a friend; they had a loved one. LIMBONG: Frederick says that ALS organizations around the world got Ice Bucket Challenge money. LIMBONG: Towards the end of his life, Pete Frates couldn’t walk or breathe on his own. Pete Frates said that raising awareness was his calling, and Frederick says he succeeded. Besides the money and the research and the celebrity endorsements, Peter Frates got the word out about the symptoms and challenges of ALS and made those who were also living with the disease feel less alone.

Keywords: [“ALS”, “Frates”, “Pete”]
Source: https://www.npr.org/2019/12/09/786492826/pete-frates-who-helped-raise-millions-for-als-research-dies-at-34

The ALS Association

ROADS to a better ALS outcome measure: the new Rasch-Built Overall ALS Disability Scale. This webinar will present the rationale for creating a new ALS disability scale, give an overview on the creation and validation of the ROADS, and will discuss advantage of using this new tool for ALS research and clinical practice. Patients with ALS and their caregivers will learn more about how ALS disease progression is measured and why it matters, and clinicians and researchers will be provided with specific details about the ROADS to allow its use in clinical trials and at the bedside. Despite the growing body of research on caregivers in ALS, the most vulnerable and isolated population of caregivers, children and youth caregivers, or “Young caregivers,” remain hidden. Young caregivers, between the ages of 5-19, participate in all aspects of daily care, from feeding and bathing, to toileting and transferring, all in relative isolation. A growing body of international young caregiver research highlights the emotional and social impacts, underscoring gaps in evidence-based programming across countries. A survey of U.S. families in ALS found almost one third of families have a child or youth under age 18 providing care. Recent data suggests sleep disruption and minimal caregiving training is common in young caregivers, increasing anxiety and setting up the potential for long-term health effects in young caregivers. Dr. Kavanaugh will provide a discussion of current research on children and youth caregivers in ALS/MND, including perspectives of the person with ALS, how research has been used to inform evidence-based interventions and supports, and a roadmap for future inclusion of children and youth in caregiving research, programming, and supports.

Keywords: [“caregiver”, “ALS”, “research”]
Source: http://web.alsa.org/site/PageNavigator/ALSA_research_news

Amylyx: This is a phase II, multicenter, randomized, double-blind, placebo-controlled study evaluating the safety, tolerability, efficacy, pharmacokinetics and biological activity of AMX0035. The medication comes in powder form that the patient mixes with water and takes orally twice a day. CY 5022: This drug treatment study is for symptom management. CK-2127107 is intended to improve function of skeletal muscles, including respiratory muscles. Create PGB Study: This study will prospectively collect data on approximately 700 patients with amyotrophic lateral sclerosis or a related neurodegenerative disorder such as ALS-frontotemporal dementia, primary lateral sclerosis, hereditary spastic paraplegia, progressive muscular atrophy, and multisystem proteinopathy. The first is to better understand the genetic contribution to ALS and related neurodegenerative disorders. The second is to prepare for a future of clinical trials in which potential treatments will be tested in patients who share certain characteristics such as a specific genetic cause of disease. All enrolled patients will undergo five in-person evaluations at one of the CReATe consortium clinical sites as well as annual remote evaluations. In-person evaluations will include motor, cognitive and functional assessments as well as collection of biological fluids. Family members of patients with apparently sporadic disease may also participate through a remote-evaluation process in which they provide limited information about their medical history as well as biological samples. Twin Cities ALS Research Consortium: The HCMC ALS Center of Excellence collaborates in research with other local clinics including the University of Minnesota. This consortium may provide access to additional ALS related research studies.

Keywords: [“study”, “patient”, “biological”]
Source: https://www.hhrinstitute.org/our-research/als-amyotrophic-lateral-sclerosis/
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