Calendar of Events
S Sun
M Mon
T Tue
W Wed
T Thu
F Fri
S Sat
0 events,
0 events,
0 events,
0 events,
1 event,
0 events,
0 events,
0 events,
0 events,
1 event,
January Social Hour
January Social Hour
Happy 2023! Time to make some new friends and catch up with old ones in the first social hour of the new year. For those who may not know, social hour is an hour-long meeting where members of the community can come to hang out, chat, and spend time together. We know that the ALS…
1 event,
3 events,
Weekly HEALEY ALS Platform Trial Webinar
Weekly HEALEY ALS Platform Trial Webinar
Special Topic: Regimen C Updates Please join us on Thursday, January 12 at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD, and Merit Cudkowicz, MD, MSc will present updates on the Platform Trial and answer questions from the audience. In addition, we will be…
0 events,
0 events,
0 events,
0 events,
0 events,
2 events,
50 in 1 Bar Crawl for ALS
50 in 1 Bar Crawl for ALS
The 50 in 1 Bar Crawl is back! Saturday, February 4th 2023 After the past couple of years we could all use a drink…or a few. We will attempt to have all 50 states participate in the largest ALS Bar Crawl ever! Each state will host at least one crawl to make this the ultimate ALS…
3 events,
Why Your Participation in the National ALS Registry Matters
Why Your Participation in the National ALS Registry Matters
About the Program: Join us for our January ALS Learning series with Dr. Paul Mehta to learn how the National ALS Registry helps advance research. Dr. Mehta will discuss how to join the National ALS Registry, what information they collect and why, and the type of research the registry is conducting. A Q&A session will…
Pat’s Maps
Pat’s Maps
You’ve heard of advocating for ALS, you’ve heard of organizing for ALS, but have you ever heard of…mapping it? That’s right, I said mapping! He has created many maps for his Geospatial Hub, including a map of ALS clinics throughout the US, so people living with and impacted by ALS can easily see where their…
0 events,
0 events,
0 events,
0 events,
0 events,
2 events,
What Do I Need to Know About Clinical Trials?
What Do I Need to Know About Clinical Trials?
Learn about the importance of clinical trials, how to find a suitable clinical trial, and what to consider if you want to take part and next steps. Moderated by Rachael Marsden. Panelists include Allison Bulat, Nadia Sethi & Paula Trefiak.
2 events,
Weekly HEALEY ALS Platform Trial Webinar
Weekly HEALEY ALS Platform Trial Webinar
Weekly Q&A with guest speaker Jonathan Katz, MD, Site Investigator at CPMC
Instagram 101
Instagram 101
They say a picture is worth a thousand words, which means pictures are pretty powerful. Would you like to harness the power of photos and videos to help enhance your advocacy? Then look no further than Instagram! This photo-centered platform can help you add some creativity and depth to telling your story and advocating in…
0 events,
0 events,
0 events,
0 events,
2 events,
Ask Me Anything ALS – Feeding Tubes/Nutrition
Ask Me Anything ALS – Feeding Tubes/Nutrition
As ALS progresses, eating and drinking can become difficult, which can often lead to discussions about feeding tubes. The decision to get a feeding tube is a personal one. There are advantages and disadvantages that must be taken into account when considering a feeding tube. It can be helpful to hear from those who have…
1 event,
3 events,
I AM ALS Town Hall on Synapticure
I AM ALS Town Hall on Synapticure
Gather around, good people! I AM ALS is hosting a Town Hall on Thursday, February 2nd at 5 pm, ET! Brian, Sandra, and I AM ALS’s board will give a presentation on Synapticure, how I AM ALS has taken steps to create an Independent Committee for any matters related to Synapticure, and, of course, answer…