2017 ALS/MND Meetings in Boston

Thanks to everyone who joined us for the 25th Annual Alliance Meeting, 15th Annual Allied Professionals Forum and 28th Annual Symposium on ALS/MND. This year’s meetings were held in Boston, MA, USA at the Westin Boston Waterfront, and the events were co-hosted by two Alliance members: ALS Therapy Development Institute and the ALS Hope Foundation. Here’s a wrap up of the meetings, with links to more detailed information.

For more, check out the Alliance’s social media posts from the meetings (FacebookTwitter) and follow the hashtags #alssymp and #alsmndwithoutborders!

25th Annual Alliance Meeting, 5-6 December

We set a record at the 2017 Alliance Meeting, with more than 120 attendees representing over 25 countries! This year, we celebrated our 25th birthday, and we hope you caught this great video that Alliance members made to celebrate:

During the Alliance Meeting, more than 20 presenters spoke about programming for people with ALS/MND and their carers, research and technology, strategic planning, governance and more. The Alliance Meeting also featured a scientific presentation from Dr. Jonathan Glass.

You can read through the 2017 Alliance Meeting agenda and watch video from all of our presenters on the 2017 meetings page. You can also watch video of the afternoon’s Ask The Experts session on the Alliance’s Facebook page. 

Alliance Group Photo, Boston, 2017

15th Annual Allied Professionals Forum, 7 December

We were proud to host more than 250 allied health professionals for this year’s APF in Boston. During the APF, 16 speakers gave presentations on assistive technology, developing resources for families and carers, models of care, managing cognitive change and more.

Special thanks to Stephen Winthrop, who gave a beautiful opening address and reminded us that PALS are at the centre of our work.

You can read through the 2017 APF agenda and watch video recordings of every presentation on the 2017 meetings page.

28th Annual Symposium on ALS/MND, 8-10 December

Here are some resources from the 2017 Symposium, organised by our colleagues at the Motor Neurone Disease Association.

Symposium abstracts are available online.

With presenter permission, many posters and slides from the Symposium are also available online.

We also recommend that you read the MND Research Blog’s summary of the Clinical Trials Session, including information on on masitinib, tirasemtiv, rasagiline, ibudilast, edaravone and lithium carbonate in ALS/MND.

Thank You

We’d like to say thanks…

Thank you to the dedicated AV team at ASETS and the brilliant Conference Team at the MND Association for making these meetings possible.

Thank you to our generous co-hosts, ALS Therapy Development Institute and the ALS Hope Foundation.

Thank you to The ALS Association Massachusetts Chapter and Compassionate Care ALS for helping to provide equipment and services for people living with ALS/MND who visited Boston during the meetings. Thanks also to MT Pharma America for sponsoring van rides for people with ALS/MND.

Finally, a huge debt of gratitude to our Platinum Sponsor, Cytokinetics! Without their support, the Alliance Meeting and APF would not have been possible.




Congratulations, Winners!

Every year, the Alliance is proud to present two special awards during the Opening Ceremony of the International Symposium on ALS/MND.

On December 8, 2017, at the Westin Boston Waterfront, we presented this year’s Humanitarian and Forbes Norris Awards to a crowd of nearly 1,300 attendees.

The Humanitarian Award

The Humanitarian Award recognises a non-scientific contribution to the global ALS/MND community. In 2017, we were honored to recognise Peter Frates, Patrick Quinn and Anthony Senerchia, Jr., the founders of the Ice Bucket Challenge. The IBC raised over $200 million worldwide, making it the single largest fundraising idea in ALS/MND history. Moreover, the notoriety of the IBC has raised awareness of ALS/MND on a global scale. Pete, Pat and Anthony, 3 people living with ALS/MND, were the creators of the Challenge, and they have made a remarkable contribution to our community. Sadly, Anthony Senerchia, Jr., lost his battle with ALS/MND on November 25, 2017, at the age of 46.

This year, Alliance Chairman Steve Bell presented the Humanitarian Award. Nancy Frates – Peter’s mother – accepted the award bowl in-person, on behalf of the three families. Watch a brief interview with Steve and Nancy on Twitter. (Thanks @mndassoc!)

Steve Bell and Nancy Frates

Steve Bell presents the Humanitarian Award to Nancy Frates, accepting on behalf of the winners

The Forbes Norris Award

The Forbes Norris Award honors the memory of Dr. Forbes “Ted” Norris by recognising a neurologist who has shown exceptional dedication to caring for people with ALS/MND and conducting research to find a cure. The 2017 Forbes Norris Award winner was Dr. Merit Cudkowicz, a committed and compassionate clinician and researcher. Among her many accomplishments, Dr. Cudkowicz is the Chief of Neurology and Director of the ALS Clinic at Massachusetts General Hospital, and she was the co-founder of NEALS

Dr. Mamede de Carvalho, the 2016 Forbes Norris winner, introduced the award in Boston. Although Dr. Cudkowicz couldn’t be with us to accept her award bowl in-person, she shared this heartfelt message. We thank Merit for her dedicated service to people with ALS/MND.

Merit Cudkowicz

Dr. Merit Cudkowicz

Congratulations to this year’s winners. Thank you for being a part of the global fight against ALS/MND.

Registration Now Open: Boston 2017

Registration is now open for the 2017 Alliance Meeting, Allied Professionals Forum and Symposium on ALS/MND.

These events will be held in Boston, MA, USA, at the Westin Boston Waterfront Hotel. Book your hotel room here!

Here is all the information you need to join us in Boston.

25th Annual Alliance Meeting (5-6 December)

The 25th Annual Alliance Meeting will be held on 5-6 December. During the Alliance Meeting, ALS/MND associations from all over the world come together to share their knowledge and experience. The agenda will focus on issues of organizational development. REGISTER HERE.

15th Annual Allied Professionals Forum (7 December)

The 15th Annual Allied Professionals Forum (APF) will be held on 7 December. During the APF, healthcare professionals with experience in ALS/MND share their hands-on experience and practical knowledge. The agenda will focus on ideas practitioners can apply in their own clinical settings to improve the care and management of people with ALS/MND worldwide. REGISTER HERE.

28th Annual Symposium on ALS/MND (8-10 December)

The 28th Annual Symposium on ALS/MND will be held on 8-10 December. The symposium is the largest medical and scientific conference specific to ALS/MND. Each year, the symposium attracts over 800 neurologists and researchers. REGISTER HERE.

A special thanks to this year’s co-hosts, ALS Therapy Development Institute and the ALS Hope Foundation