Calendar of Events
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2 events,
The Fight ALS Film Fest: Matter of Mind: My ALS, with a discussion moderated by Michele Stellato and Charlie Wren
The Fight ALS Film Fest: Matter of Mind: My ALS, with a discussion moderated by Michele Stellato and Charlie Wren
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
1 event,
2 events,
I AM ALS Social Hour
I AM ALS Social Hour
***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,…
2 events,
MDA’s Wings Over Wall Street
MDA’s Wings Over Wall Street
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…
1 event,
ALS Office Hours
ALS Office Hours
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…
0 events,
1 event,
5th Annual Run for Hope 5K
5th Annual Run for Hope 5K
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
0 events,
0 events,
1 event,
1 event,
Weekly HEALEY ALS Platform Trial Webinar
Weekly HEALEY ALS Platform Trial Webinar
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…
1 event,
ALS Office Hours
ALS Office Hours
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…
0 events,
0 events,
1 event,
Big Freeze 9
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…
1 event,
ALS Association Greater Sacramento Chapter Support Group Meetings
ALS Association Greater Sacramento Chapter Support Group Meetings
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…
2 events,
ALS TDI Community Conversations
ALS TDI Community Conversations
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,…
4 events,
ALS Association Greater Sacramento Chapter Support Group Meetings
ALS Association Greater Sacramento Chapter Support Group Meetings
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.)…
Caregivers-Only Support Group
Caregivers-Only Support Group
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…
2 events,
ALS Office Hours
ALS Office Hours
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…
4 events,
Caregiver Only Support Group
Caregiver Only Support Group
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…
ALS Association Greater Sacramento Chapter Support Group Meetings
ALS Association Greater Sacramento Chapter Support Group Meetings
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.)…
0 events,
1 event,
A Pulmonologist Explains Tracheostomy and Invasive Ventilation for People Living with ALS
A Pulmonologist Explains Tracheostomy and Invasive Ventilation for People Living with ALS
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.…
1 event,
Chicagoland Support Group
Chicagoland Support Group
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.*
2 events,
Scientific Advisory Council Update & Q&A
Scientific Advisory Council Update & Q&A
A mid-year update from the Scientific Advisory Council.
Understanding Statistical and Clinical Significance
Understanding Statistical and Clinical Significance
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…
3 events,
Virtual Youth & Teen Advocacy Day
Virtual Youth & Teen Advocacy Day
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,…
Weekly HEALEY ALS Platform Trial Webinar
Weekly HEALEY ALS Platform Trial Webinar
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…
The Artistry of ALS – Panel Discussion
The Artistry of ALS – Panel Discussion
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…
1 event,
ALS Office Hours
ALS Office Hours
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…
1 event,
ALS TDI Tri-State Trek
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…
1 event,
1 event,
Living After Loss (Bereavement Group)
Living After Loss (Bereavement Group)
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…
1 event,
ALS Association Greater Sacramento Chapter Transitions Support Group Meetings
ALS Association Greater Sacramento Chapter Transitions Support Group Meetings
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.)…
0 events,
2 events,
Weekly HEALEY ALS Platform Trial Webinar
Weekly HEALEY ALS Platform Trial Webinar
Weekly Q&A with guest speaker Hilda Gutierrez, MD of Beth Israel Deaconess Medical Center
Right Here, Right Now – Comedy Fundraiser for ALS
Right Here, Right Now – Comedy Fundraiser for ALS
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…
0 events,
1 event,
Walnut 5K Run/Walk for ALS
Walnut 5K Run/Walk for ALS
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…