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…
Join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for this new virtual discussion series. These conversations will provide an overview of research at ALS TDI, discuss current clinical trials, and provide space to converse and ask questions about ALS science and research. Through this series,…
As part of our weekly webinar series, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and Expanded Access Protocols (EAPs). Please join us on Thursday, March 14th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs. We will be joined…
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.
"ALS Treatments: Riluzole, Radicava, and Relyvrio" Presented by the NEALS Information and Community Education (NICE) Working Group Monday, March 18, 2024 at 4:30pm ET Moderated by Senda Ajroud-Driss, this webinar for both clinicians and people living with ALS will review the 3 drugs that are currently FDA-approved in the United States for the general ALS population. Panelists,…
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.
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 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 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.
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…
Please join us on Thursday, March 21st, 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 guest speaker Karen Parada,…
2024 UC Irvine Neurodegeneration Community Workshop Registration With support from the Chan Zuckerberg Initiative, we are pleased to announce that the UC Irvine Neurodegeneration Community Workshop will be back in 2024! Thank you to everyone who helped make our inaugural, virtual workshop in 2022 a success. We have listened to your feedback and we are…
2024 UC Irvine Neurodegeneration Community Workshop Registration With support from the Chan Zuckerberg Initiative, we are pleased to announce that the UC Irvine Neurodegeneration Community Workshop will be back in 2024! Thank you to everyone who helped make our inaugural, virtual workshop in 2022 a success. We have listened to your feedback and we are…
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.
March 27, 2024 8:00 AM Eastern Time (US and Canada) This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY, MAGNET and SMART. They will update us on their approach, recruitment, trial eligibility and their latest news. Moderator: Dr. Nicholas Cole – Chair of Scientific Advisory Council Panel: Dr.…
