This is an extraordinary moment in ALS care, research and discovery. Through the efforts of a fiercely determined group of ALS advocates, two new drugs were approved by the FDA to slow the progression of ALS over the last year. A record total of more than 4,000 people living with ALS, caregivers and families received…
One of the most common comments we hear is how hard it is to maintain friendships once someone is diagnosed with ALS. Join us to hear examples of friends who are making the best of a bad situation, examples of how to support a friend with ALS, and how people with ALS can continue to support their support squad!
An informal conversation with the 2022 Award winners on their careers and their contributions to the field of ALS/MND. Panelists include Sally Light (Humanitarian Award recipient), Dr. Richard Bedlack (Forbes Norris Award recipient), Richard Cave (Allied Health Professional Award recipient).
National ALS Registry: Learn How You Can Join the Fight Against ALS.
About the Program A person living with ALS may not feel comfortable addressing relationship, intimacy and sexual health changes that occur during their ALS journey with their healthcare providers. Although their ALS care team is always there to help, they may not feel fully equipped to assist them. The good news is that there are…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
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…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Transition Support Group Meeting (Every fourth Tuesday of every month.)…
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…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
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.
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
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.
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Making Connections Support Group Meeting (Every third Saturday of every…
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),…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Tahoe Support Group Meeting (Every third Thursday of every month.)…
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…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Sacramento Support Group Meeting (Every third Saturday of every month.)…
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.
