The ALS Therapy Development Institute (ALS TDI) and the ALS Hope Foundation are serving as local co-hosts of the 25th Annual Meeting of the International Alliance of ALS/MND Associations, the 15th Annual Allied Health Professionals Forum and the 28th International Symposium on ALS/MND Research in Boston occurring December 5 – 10, 2017.
A dozen presentations/posters from team members at ALS TDI will be featured during this week of meetings. More information about those talks and posters available here.
The following is a synopsis of what people with ALS, families, carers, scientists, health professionals, media and others should know about each day of this week-long series of meetings:
Tuesday December 5
25TH ANNUAL GENERAL MEETING OF THE INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS
Westin Waterfront, 9:00 AM – 5:00 PM | Fee to attend. Click here.
DETAILS | Approximately 20 presentations throughout the day on best-practices, education, fundraising and research programs from member associations. The audience is mostly executive level staff of member associations, and often includes 15-20 people with ALS/MND and their care providers from about 40 different countries. Full agenda here.
Wednesday December 6
25TH ANNUAL GENERAL MEETING OF THE INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS
Westin Waterfront, 9:00 AM – 1:00 PM | Fee to attend. Click here.
DETAILS | This meeting will include a strategic planning session for the Alliance’s membership. Additionally, a few ALS/MND research talks will be given. Full agenda here.
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PALS/CALS NETWORKING LUNCH
Westin Waterfront, 12:00 PM – 2:00 PM | FREE but registration required. Click here.
DETAILS | This is a private lunch provided to people with ALS/MND and their carers. No presentations, no pitches from scientists or companies, just a way for people with ALS/MND to meet each other and network with others from across the globe. Registration required online here.
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ASK THE EXPERTS
Westin Waterfront, 2:30 PM – 4:30 PM | FREE; no registration required. Full program here.
DETAILS | A discussion designed for people with ALS, their caregivers and families. Scientific discussion with Terry Heiman-Patterson, M.D., Ph.D., Steve Perrin, Ph.D., Jonathan Glass, M.D. and James Berry, M.D., M.P.H.. Event will be webcast online live. Find more information about program here.
Thursday December 7
15TH ANNUAL ALLIED HEALTH PROFESSIONALS FORUM (APF)
Westin Waterfront, 8:30 AM – 4:30 PM | Fee to attend; Full program here.
DETAILS | This is a full day of presentations designed for allied health professionals on topics ranging from different clinic and care models, breathing interventions, augmentative / alternative communication, mobility tools, social and family support programs, etc. For the first time, a person with ALS will open the APF with an address to delegates. A full program is available online here.
Friday December 8
28TH ANNUAL INTERNATIONAL SYMPOSIUM ON ALS/MND
Westin Waterfront, 8:30 AM – 7:30 PM | Fee to attend; Program here.
DETAILS | Day One of the Symposium will feature:
- Pivotal results from the Phase 3 clinical trial in people with ALS of tirasemtiv, announced for the first time by drug developer Cytokinetics.
- Steve Perrin (ALS TDI) and a presentation on initial data from the Precision Medicine Program.
- Additional discussions on emerging proposed treatments for ALS/MND such as masitinib (AB Science) and the recently FDA approved edaravone (Mitsubishi Tanabe Pharma).
- Several other key preclinical and clinical readouts across sessions devoted to cell biology, RNA binding, autonomy and quality of life.
- A total of 30 platform talks and hundreds of poster presentations, including several from ALS TDI scientists.
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ALS THERAPY DEVELOPMENT INSTITUTE LAB TOURS
ALS Therapy Development Institute, 7:00 PM - 8:30 PM | FREE to attend but registration required here.
Saturday December 9
28TH ANNUAL INTERNATIONAL SYMPOSIUM ON ALS/MND
Westin Waterfront, 8:30 AM – 7:30 PM | Fee to attend; Program here.
DETAILS | Day Two of the Symposium will feature:
- "Right To Try" and "Compassionate Use" debate, as well as important discussions on advancing research using various therapeutic strategies to address familial ALS (ie gene therapy and antisense oligoneucleotide (ASO) research from Biogen/Ionis and others).
- A deep dive into ALS genes SOD1, TDP43 and C9orf72, to run concurrently with a session on bio-fluid, image based and other proposed biomarkers for ALS/MND.
- A clinical session exploring topics from the epidemiology of disease to disease management.
- A total of 58 platform talks followed by the presentation of hundreds of additional posters, including several from ALS TDI scientists.
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ALS THERAPY DEVELOPMENT INSTITUTE LAB TOURS
ALS Therapy Development Institute, 7:00 PM - 8:30 PM | FREE to attend but registration required here.
Sunday December 10
28TH ANNUAL INTERNATIONAL SYMPOSIUM ON ALS/MND
Westin Waterfront, 8:30 AM – 3:30 PM | Fee to attend; Program here.
DETAILS | Day Three of the Symposium will feature:
- 24 additional platform talks, including those on neuroinflammation, integrated omics and pathway analysis, clinical progression markers and the important topic of cognitive change in people with ALS/MND.
- The joint closing session will include a late breaking news session, a Patient Impact Award and invitation to the meeting in 2018 in Glasgow, Scotland.
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Note about Meeting Organization | The meetings are organized annually by the Motor Neurone Disease Association and the International Alliance of ALS/MND Associations. A competitive application process is used to determine where the meetings will be held. This year is the first time that two US-based ALS organizations applied to be local co-hosts together. The meeting organizers received a record number of abstract proposals and the event will be the largest to occur in North America in the history of the Symposium.
Note for People with ALS | The Westin is a modern and highly accessible hotel. ALS TDI does not control registration fees for events, however many of the organizations that do charge fees to attend meetings may be able to make exceptions for people with ALS if they are asked to do so in advance. Email us and we'll be happy to connect you to the right person to discuss that - letstalk@als.net. Click here to download information about assistance from local organizations as well as helpful information about attending these events.
Note about Patient Fellows Program | This year marks the first ever Patient Fellows Program at the International Symposium on ALS/MND. It will support six people with ALS and their families who are attending the symposium. Although ALS TDI advocated for it, the fellowship is a private one, and not operated by ALS TDI. Learn more about Patient Fellows and the goals of this program online here: https://alsmndpatientfellows.wordpress.com/.
Note for Media | Please contact pr@als.net to learn about attendance options and assistance arranging day passes or setting up interviews.
Note on Social Media | The official hashtag for the week-long series of events will be #alssymp. You can follow this hashtag on Facebook and primarily Twitter leading up to, during, and after the events listed above.
Note about Satellite Meetings | There are typically meetings of academic consortia (i.e. NEALS, Project MinE, etc) during the week that often overlap with the meetings listed above. In addition, many companies or other interested parties will sponsor cocktails or dinner sessions following the day’s events. These events are usually all by invitation only, but if you are interested in attending a specific meeting, asking for an invitation usually works too!
Note on ALS TDI's Involvement in Program Development | ALS TDI did not have exclusive control over the content of the program for any given day or meeting. Here is how ALS TDI did participate in program development:
- Steve Perrin, Ph.D. and Robert Goldstein were members of the program committee for the Ask the Experts session, along with representatives from the ALS Hope Foundation.
- Steve Perrin, Ph.D. and Fernando G. Vieira, M.D. were members of the abstract review/program committee of the International Symposium. Six other members of the committee came from other foundations or academic research labs from across the United States and Europe.
- Robert Goldstein was a member of the program committee for the Allied Professionals Forum along with other representatives from the United States, United Kingdom, and India.
- Robert Goldstein was a member of the selection committee for the Patient Fellowship Program together with other representatives from the United States, United Kingdom and Iceland.
Note on Financial Compensation as Local Co-Host | ALS TDI did not set registration fees for the meeting, and ALS TDI does not receive any share of revenue related to any of the meetings above. ALS TDI did not receive any financial compensation to host this event in Boston. No staff of ALS TDI were financially compensated for their participation on program committee(s).
Questions/Comments about the meetings or information above can be emailed to letstalk@als.net or by calling 617-441-7200. ALS TDI is proud to be local co-host of this meeting and encourages people with ALS, local researchers and others to attend these meetings to listen, learn and share ideas and opinions.
