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,…
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,
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…
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,…
1 event,
Big Feelings in Familial ALS: A Community Conversation about Generational Trauma
Big Feelings in Familial ALS: A Community Conversation about Generational Trauma
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…
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.…
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…
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…