Presenters: Dr. Jinsy Andrews (Columbia University), Dr. Christina Fournier (Emory University), Dr. Eric Macklin (Mass General Hospital) What do researchers and scientists mean when they describe a study as “statistically significant?” How do people with ALS and clinicians understand whether or not a treatment option is “clinically significant?” Join us for a webinar and panel…
Rare Disease Legislative Advocates (RDLA) invites members of the rare disease community between 10 and 18 years old to participate in our first Virtual Youth & Teen Advocacy Day. Advocates will have the opportunity to virtually meet with their Members of Congress and share their rare disease story. Prior to meetings with Members of Congress,…
Please join us on Thursday, June 22nd 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. We will be joined by Dr. Shafeeq Ladha of Barrow…
Artist Robert Genn once said, “Art is a form of love. Art is the ultimate gift. Art heals life.” Art is also a force that is alive and well in the ALS community. ALS can be an incredibly confining disease, both emotionally and physically, but art can transcend these confines. Art can provide healing from the…
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 Tri-State Trek is a weekend bike ride to benefit ALS research at the ALS Therapy Development Institute (ALS TDI). All proceeds will help find treatments for ALS, also known as Lou Gehrig's disease. We are thrilled to announce that the 2023 Trek will be moving to Northern New England, with a beautiful new route through…
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…
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.)…
Weekly Q&A with guest speaker Hilda Gutierrez, MD of Beth Israel Deaconess Medical Center
We're living 'Right Here, Right Now' Let's gather to laugh and raise funds for ALS Heroes. Jules has always loved stand-up comedy and as his world shifts with ALS, comedy has provided a way for him to disconnect and lighten the mood in an otherwise dark place. Five local comics come together to connect us…
You can register or donate to our online link. We typically get 400-450 participants! Walnut 5K Run/Walk for ALS Saturday, July 1, 2023 8:00 a.m. 323 S, Main St., Walnut, Illinois Starting line is in front of Bureau Valley Elementary Walnut Campus. Check in at park tent south of the school. All proceeds will be…
Weekly Q&A with guest speaker Bill Cho, MD, PhD of Calico Life Sciences (Regimen F)
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…
The ENCALS meeting 2023 will be hosted in Barcelona, Spain from Wednesday 12 to Friday 14 of July 2023. On Tuesday 11 July there will be satellite meetings of all our sponsors and partners. Local organiser of this meeting is dr. Monica Povedano Panades on behalf of the Bellvitge University Hospital in Barcelona. Registration…
Weekly Q&A with guest speaker Sarah Heintzman APRN-CNP from Ohio State Universit
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…
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.)…
A Manual of Instructions: Maps for a Few Dark Places featuring Dr. Scott Eberle with an introduction by CCALS Founder, Ron Hoffman Sunday, July 16, 2023 1:00 - 2:00 p.m. ET It’s not often in life that you get a few maps for how to traverse the dark places of a serious illness. Scott Eberle, MD,…
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.*
Join us for our July ALS Learning Series with Dr. Senda Ajroud-Driss, neurologist and director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. She’ll discuss updates in ALS clinical research, provide information on trials that are currently recruiting, and review inclusion criteria, with a Q & A to…
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.)…
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…
Regimen G Drug Science Q&A Webinar with Denali Therapeutics
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…
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.)…
NINDS Fundamental Neuroscience Working Group Public Webinar July 27, 2023 | 12:00 - 1:00 PM ET Please click this link to register for the webinar What is the Fundamental Neuroscience Working Group? Find out more here: NANDSC Fundamental Neuroscience Working Group FNWG Public Webinar Agenda (tentative) Introductory Remarks (Walter Koroshetz, 5 min) Committee Charge (Lyn Jakeman,…
Please join us on Thursday, July 27th 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 will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Dr. Suma Babu of Mass General Hospital to…
Join me, Kristine Copley, our founder, Ron Hoffman, and tech genius Tom Meadows in a groundbreaking presentation about hidden and undocumented functionality in the Apple OS that can specifically benefit people with ALS. Tom’s childhood friend, Steve, was diagnosed with ALS in 2021. Steve's disease progressed and using his phone became more and more difficult.…
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,…
