***If you’ve signed up already in 2023, there’s no need to do it again. You will be added to the calendar invite.*** May has arrived, and it brings with it another social hour! For those who may not know, social hour is an hour-long meeting where members of the community can come to hang out,…
PLEASE JOIN US ON JUNE 1, 2023 AT 6:00 PM AT THE EDISON BALLROOM IN NYC FOR WINGS OVER WALL STREET'S GALA TO RAISE FUNDS FOR ALS RESEARCH DONATE or SPONSOR Wings TODAY! If you were thinking about supporting a great cause with crypto, then you've come to the right place. Wings now offers you an opportunity to…
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…
5th Annual Run for Hope 5KSave the Date for our Run for Hope! Sunday, June 4, 2023 7AM Registration and 8AM ET Run StartNorristown Farm Park 2500 Upper Farm Road, Norristown, PA 19403
Please join us on Thursday, June 8th 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 Brandy Quarles, MPH, to…
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…
Big Freeze is returning for 2023! We’re so excited to bring back Big Freeze for it’s ninth consecutive year, raising vital funds for MND and to help eradicate the Beast! We’ll be back at the G’ for the King’s Birthday Monday, and we’re bringing back the march, the infamous celebrity slide and all the excitement…
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…
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,…
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…
When someone is diagnosed with ALS, it can devastate a family. Imagine multiple family members being diagnosed within your lifetime. And knowing that other living family members and future generations might be at risk. Imagine growing up with the specter of ALS chasing you. Being ever-present. Your family tree becomes suspect. Who had it? Who…
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…
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.)…
Concierto De Esperanza Join us for a musical evening celebrating Latin American music and raising awareness about ALS and Neurodegenerative Diseases in the Latino community. Saturday, June 17, 2023 6:00PM to 10:00PM ET Esperanza Arts Center 4261 North 5th Street, Philadelphia, PA, 19140The concert features: Alexa Anderson, soprano; Elizabeth Patterson, soprano; Celeste Camarena Mojica, mezzo soprano; Sergio Gonzalez,…
Date/Time: Monday, June 19, 2023, at 12:00 p.m. CST Registration Link: https://attendee.gotowebinar.com/register/4658833508087010396 About the Program: Not everyone with ALS will need or choose to have a tracheostomy, but there may come a time when it’s necessary for continued breathing. You may have respiratory weakness that can no longer be treated with a mask and non-invasive ventilation.…
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.*
A mid-year update from the Scientific Advisory Council.
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…
