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…
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.
Carolyn Parrott, whose daughter passed in 2021 after bravely facing bulbar-onset ALS, expressed a longing to connect with other mothers in solidarity. Join Carolyn and our CCALS team in this unique opportunity to share your mother-heart with others. Register
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…
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
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.
3:00pm ET Come share the informal gathering designed to offer genuine support for those engaged in ALS caregiving. Enjoy the opportunity to be with other folks who have an intimate understanding of ALS and share your unique point of view as a caregiver. It is truly a wonderful experience to sit in council with ALS…
As part of our weekly webinar series, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, February 8th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs. This week, we will be joined…
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…
