On January 17th at 7:30 p.m. 51 Regal Cinemas in 51 cities across the U.S. will be hosting screenings of Go On, Be Brave! Join the ALS TDI community at a showing near you! Get Tickets Here Go On, Be Brave is the story of Andrea Lytle Peet’s race against time and an attempt at the impossible: to…
The Youth Lou Gehrig Day Team seeks to raise ALS Awareness, promote Lou Gehrig Day, celebrate his legacy, engage and inspire millions of kids to advocate on behalf of people living with ALS, and unite the ALS community for a memorable day. Click the link to join.
The Write Stuff Team seeks to empower and embrace all perspectives as they share their stories through writing with the intent of educating others and raising awareness of ALS both within and outside of the ALS community. Click the link to join.
The Clinical Trials Team partners with researchers, government agencies, and drug sponsors to ensure access, efficiency and humaneness of ALS therapy development and approval. It collects and distributes information regarding clinical trials to the ALS community. Click the link to join.
2:00pm ET Enjoy the connection and unique perspective of other men living with ALS, male caregivers of persons living with ALS, sons of those with ALS, or any man touched by the disease. We will gather in council to share our experiences with the broad motivation to bring heartfelt connections and healing to the ALS…
The Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
3:00pm ET Enjoy the connection and unique perspective of other women living with ALS, female caregivers of persons living with ALS, daughters of those with ALS, or any woman touched by the disease. We will gather in council to share our experiences with the broad motivation to bring heartfelt connections and healing to the ALS…
Pridopidine update with Prilenia Therapeutics
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 Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
Chicagoland: Third Saturday | 10:30 am - 12:00 pm Video Call-In: zoom.us/j/422596742 Call-In: 312-626-6799, Meeting ID: 422596742 For more information or to RSVP: audrey@alsachicago.org
The Familial Team seeks to raise awareness of familial ALS/FTD and engage, empower, and support the familial ALS community and advocate for them with ALS/FTD researchers and funders. Click the link to sign up.
Travel has many purposes-seeing sights, trying new things, satisfying your sense of adventure, seeing people you love, and more. It is something that helps give life meaning for so many people. When you have ALS, travel becomes significantly harder. The complexities of ALS can make travel seem impossible, and freedom restrictions can lead to feelings…
An open, supportive monthly bereavement group for anyone (family, friend, etc.) who has lost a loved one to ALS within the past year. This group will provide a place to connect with others who have experienced the loss of a loved one to ALS; stories will be told, feelings will be explored, and information will…
I AM ALS offers weekly virtual support groups for people who are living with and impacted by ALS. Each group provides a space for people to connect with others who can relate to what they’re going through, and receive emotional support.' Every Tuesday from 12-1 p.m. CST. This group supports all people living with ALS…
The Lou Gehrig Day Team seeks to raise ALS Awareness, promote Lou Gehrig Day, celebrate Lou's legacy, and unite the ALS community for a memorable day. Click the link to sign up.
This webinar will provide information on ALS/MND treatments currently in Phase 3 Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed.
I AM ALS offers weekly virtual support groups for people who are living with and impacted by ALS. Each group provides a space for people to connect with others who can relate to what they’re going through, and receive emotional support.' Fourth Wednesday of every month from 12-1pm CST: This group supports Veterans living with…
The Community Outreach Team seeks to engage, educate and empower themselves and others for the purpose of creating better care, treatments and cures for ALS. Click the link to join.
The Legislative Affairs Team seeks to empower and support the ALS community in their legislative advocacy efforts. They strive to build a team of passionate revolutionaries who together will develop meaningful relationships with federal legislators to secure public policies that will expand access to clinical trials, accelerate ALS therapies, eliminate access barriers, and support those…
The Youth Lou Gehrig Day Team seeks to raise ALS Awareness, promote Lou Gehrig Day, celebrate his legacy, engage and inspire millions of kids to advocate on behalf of people living with ALS, and unite the ALS community for a memorable day. Click the link to join.
The conference “Towards an Italian Coalition against Amyotrophic Lateral Sclerosis” will be held in Rome. It represents a new collective commitment in favor of people and families living with ALS, on the initiative of Sen. Francesco Silvestro, in collaboration with OMaR - Rare Diseases Observatory, Havas PR, and the Association of Parliamentary and Legislative Initiative for Health and Prevention. The event…
The Write Stuff Team seeks to empower and embrace all perspectives as they share their stories through writing with the intent of educating others and raising awareness of ALS both within and outside of the ALS community. Click the link to join.
The Clinical Trials Team partners with researchers, government agencies, and drug sponsors to ensure access, efficiency and humaneness of ALS therapy development and approval. It collects and distributes information regarding clinical trials to the ALS community. Click the link to join.
ALS Patient Fellows Share Insights from the ALS MND Symposium ALS Patient Fellows Share Insights from the ALS MND Symposium Thursday, January 25, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming Town Hall on January 25th to hear from community members who attended the International Symposium on ALS/MND this past December. This event will…
The National ALS Registry is a multi-faceted research platform. Launched in 2010, the Registry evaluates the public health burden of ALS by determining who has ALS in the United States as well as investigating the causes and risk factors for this disease. The Registry also connects persons with ALS with clinical trials and epidemiological studies,…
Please join us on Thursday, January 25th, 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. This week we will be joined by representatives from…
6:30pm ET Join a welcoming group of men and women who have lost a loved one to ALS. Share openly with others who are rebuilding their lives after profound loss. This interactive gathering will highlight where we are now and what may feel different: our identity, our values, our approach to spirituality, and more. We…
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…
