Mark your calendars! The 3rd biannual CUPA Con will be taking place January 29th and 30th, 2024 in New York City! This will be a hybrid 2-day event, with in-person attendees gaining access to special interactive sessions, networking opportunities, and an evening reception. Full conference agenda and registration link coming soon. We hope to see you there!
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.
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.
About the event Around 140,000 or more healthy people in the United States have C9orf72 repeat expansions, a few thousand more with a current ALS or FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to…
About the Presentation: Navigating ALS care can be complicated and filled with many complex decisions, including whether genetic testing is right for you. Join us for a discussion with genetic counselor Laynie Dratch, ScM CGC, as she describes the role of a genetic counselor and addresses common questions about the genetics of ALS-FTD spectrum disorders, the genetic testing process,…
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 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.
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.
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.
About the event Up to 50,000 healthy people in the United States have pathogenic GRN variants, and about one thousand more have an active FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to picture what…
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.' First Wednesday of every month from 12-1 p.m. CST: People who have lost a loved…
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 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.
Cooking for a Cause! Join Italian Chef Deborah Dal Fovo for her special online cooking class, "Valentine's Day Tiramisù x 2" -- a live-streamed cooking class from her kitchen to yours -- and learn to make not one, but two flavors of Tiramisù! All proceeds from this class will go to I AM ALS, a…
Join us for a night of all your favorite Tom Petty Songs, benefitting Hop On A Cure! Featuring The Sundogs with special guests Tyler Greenwell (Tedeschi Trucks), Dave Yoke (Susan Tedeschi, Dr. John, Scrappmatic), Bradley Cole Smith (Doublewide), Mike Rizzi (John Driskell Hopkins Band), Peter Stroud (Sheryl Crow), Coy Bowles (Zac Brown Band), and Michelle…
The Veterans team seeks to raise awareness about veteran-specific ALS issues, educate the public about ALS and veterans, connect veterans with resources to improve their quality of ALS care, and accelerate the development of and access to treatments and cures. Click the link to sign up.
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.
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.
Tuesday, February 13, 2024 4:00 - 5:00 PM ET Please join us for a conversation with Dr. Christine Vande Velde (Robert Packard Center for ALS Research), Erin Fleming (Project ALS), and Dr. Fernando Vieira (ALS Therapy Development Institute) as we explore the role of the ALS community in shaping pre-clinical research, and the transformative impact…
The Many Shades of ALS Team seeks to bring attention to and provide resources for the mental, physical and social health of people of color living with and impacted by ALS. Click the link to sign up.
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.' Second Wednesday of every month from 12-1 p.m. CST is for people who are…
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 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.
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
Speaker Series: A Comprehensive & Integrative Medicine Approach to ALS Sunday, Feb. 18, 2024, 1:00 - 2:00 pm ET Presented by Shelena C. Lalji, M.D., F.A.C.O.G. Functional Medicine Physician, ALS Advocate, Author, Speaker, Devoted Mother, and Caregiver to Husband with ALS Introduction by Ron Hoffman, CCALS Founder Join us for an informative and inspirational…
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.
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…
Meets the Third Tuesday of each month from 1 – 2:30pm Facilitator: Anne Lidsky, PhD Visit: https://lesturnerals.org/support-services/support-groups-education/ to sign up. *Meetings will be held over Zoom and a Zoom invitation will be sent via email once you register for the group.*
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.
The Many Shades of ALS Team seeks to bring attention to and provide resources for the mental, physical and social health of people of color living with and impacted by ALS. Click the link to sign up.
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. Third Wednesday of every month from 12-1 p.m. CST: People who are loved ones of…
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 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.
The Veterans team seeks to raise awareness about veteran-specific ALS issues, educate the public about ALS and veterans, connect veterans with resources to improve their quality of ALS care, and accelerate the development of and access to treatments and cures. Click the link to sign up.
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.
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.
Unveiling the ALS Trial Navigator - Empowering Your Trial Search Watch a live demo of this innovative platform and get your questions answered! Tuesday, February 27, 2024 | 3:00 - 4:00pm EDT Join us for an exciting Town Hall unveiling the innovative ALS Trial Navigator – a comprehensive resource designed to empower individuals and caregivers in…
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 Many Shades of ALS Team seeks to bring attention to and provide resources for the mental, physical and social health of people of color living with and impacted by ALS. Click the link to sign up.
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 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.
Register now for FDA’s Rare Disease Day 2024 Register now to secure your spot at FDA’s Rare Disease Day on Friday, March 1. This year’s event will explore ways to engage and collaborate with patients and advocates to support the development of medical products for rare diseases and address challenges with rare disease research. We have…
Dr. Ikjae Lee, from the Eleanor and Lou Gehrig ALS Center at Columbia University, will present a summary of literature on the intake of various macronutrients and their impact on the progression of ALS. Building on this foundation, Dr. Lee will introduce recent findings that suggest a diet with a high glycemic index may be…
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…