We are excited to announce FDA’s Rare Disease Day will be on Monday, February 27, 2023 and registration is open for this virtual event. Dr. Robert M. Califf, Commissioner of Food and Drugs, will provide opening remarks to kick off an impactful event for the rare disease community. This year’s theme is “Intersections with Rare Diseases – A patient…
February is filled with holidays: Groundhog Day, Valentine’s Day, President’s Day… It also features our monthly social hour, which isn’t technically a holiday, but we still think it’s pretty darn special! For those who may not know, social hour is an hour-long meeting where members of the community can come to hang out, chat, and spend time…
While there are currently no cures for ALS, there are numerous clinical trials taking place right now across the country with a goal of finding safe and effective therapies. With the many opportunities available, finding the right fit and participating in a clinical trial can be overwhelming and confusing. You and your loved one may…
Today the topline results were announced from the pridopidine regimen of the HEALEY ALS Platform Trial. The HEALEY ALS Platform Trial is designed to accelerate the development of breakthrough treatments for persons with ALS by testing multiple drugs at the same time. Please read the full announcement here We extend our sincere gratitude to…
ALS clinical trials must represent all people living with ALS including those from diverse genetic, racial/ethnic, socioeconomic, and geographical backgrounds.
In March 2022, I AM ALS hosted the inaugural I AM ALS Action Summit to engage stakeholders in the ALS community to improve the clinical trial experience for people living with ALS and their caregivers. Summit participants included people living with ALS, loved ones and caregivers, physicians, clinical research coordinators, advocacy organizations, biopharma allies, and key government stakeholders.
This webinar, which will take place on March 8th at 6pm ET, aims to inform the ALS community of the results from the Action Summit and will include an exchange of ideas around clinical trial recruitment and retention and ways in which you can get involved.
Please join us for a FREE educational update for patients, family members, caregivers, and medical professionals. We are thrilled to be able to bring together our world-renowned partner physicians
and researchers from Mass General Hospital, Brigham & Women's Hospital, and Cedars-Sinai Hospital to share their latest research into cures and treatments for neurological diseases. Each session includes a 30-minute presentation and one hour Q&A. This in-person event is FREE and OPEN to all and will also be live-streamed for a wider geographical reach. Bring your questions, and join us for one, two or three sessions! Breakfast and lunch will be provided.
Federal agencies provide an important forum for the brain community to connect with policymakers and officials, including in support of efforts to deliver safe and effective treatments for brain conditions. Join us for an educational webinar providing an overview of the federal regulatory process. We will highlight opportunities with the Food and Drug Administration (FDA),…
Please join us on Thursday, March 16th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. In addition, we will be discussing the importance of biomarkers…
Remembrance and Reflection The ALS Hope Foundation and the MDA/ALS Center of Hope at Temple Health invite you to attend our Remembrance and Reflection Memorial ServiceSunday, March 19, 2023 11:00AM ET The Inn at Villanova, 601 County Line Road, Wayne, PA 19087 Light refreshments will be served. Please RSVP to Paris DiLorenzo by March 13, 2023 paris@alshopefoundation.org or…
In this webinar, Dr. Angela Genge will discuss the research behind AP-10l and provide an overview of the trial and what study participation involves. The phase 2 trial of AP-101 is currently enrolling participants with Familial Amyotrophic Lateral Sclerosis and Sporadic Amyotrophic Lateral Sclerosis.
Discussion on Family and ALS Hosted by Young Faces of ALS and Her ALS Story Tuesday, March 21, 2023 | 6:00 - 7:00pm EDT Although family dynamics are always different, one thing most of us have in common is wanting to find ways to best support each other through the good and bad times. On March 21st,…
Agenda The meeting presentations will be heard, viewed, captioned, and recorded through an online teleconferencing platform. The committee will discuss new drug application (NDA) 215887, for tofersen (BIIB067) intrathecal injection, submitted by Biogen Inc., for the treatment of amyotrophic lateral sclerosis (ALS) associated with a mutation in the superoxide dismutase 1 (SOD1) gene.
Cognitive Changes in ALS - Thursday, March 23, 2023 12:00 - 1:00 p.m. CT About the Program Join us for our March ALS Learning Series discussing cognitive functions with Catherine Lomen-Hoerth, MD. She will provide an overview of ALS, including its causes and symptoms, and how it affects cognitive functioning. Dr. Lomen-Hoerth will cover the…
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease that attacks motor neurons and leads to their gradual degeneration and death, often within two years of onset. Currently, no treatments exist to stop or reverse the disease. This is the first meeting of a study committee mandated by Congress and sponsored by the National…
Please join us on Thursday, March 23rd at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. In addition, we will be joined by Jeffrey Rothstein, MD,…
Please join us for the Regimen F Drug Science Q&A Webinar on Monday, March 27th from 5:00-6:00 pm Eastern time. This webinar is open to all, and it serves as a great opportunity to learn more about the science and mechanism of action behind Regimen F, the most recent addition to the HEALEY ALS Platform Trial. Sabrina Paganoni, MD,…
Tuesday, March 28, 2023 12:30 PM ET Please join us for a webinar update on tofersen moderated by NEALS Co-Chair Dr. Jinsy Andrews. Dr. Timothy Miller will provide background on tofersen and updates from the March 22nd FDA Advisory Committee Meeting. Holly Fernandez Lynch, an expert in FDA pharmaceutical policy and regulatory standards, will be…
Familial or sporadic ALS/MND, the importance of genetic counselling and testing cant be emphasized enough. Join us for this scenario-based discussion which will look at real situations ranging from an ALS/MND asymptomatic carrier to someone whose parent had ALS/MND, but has not done genetic testing.
Join us for an educational overview of the Advanced Research Projects Agency for Health (ARPA-H), the new government agency proposed by President Biden to improve the government’s ability to speed biomedical and health solutions. This agency was created to support transformative research and development to drive biomedical and health breakthroughs – ranging from molecular to…
***If you’ve signed up already in 2023, there’s no need to do it again. You will be added to the calendar invite.*** March is marching along, but let’s take a break to just hang out together. For those who may not know, social hour is an hour-long meeting where members of the community can come…