The 24th annual meeting of the International Alliance of ALS/MND Associations was held December 4 and 5, 2016 at the Convention Centre in Dublin, Ireland. This recap includes brief comments on some of the presentations made during the Alliance meeting. 

More than 115 people representing over 30 different countries were present at the two-day meeting. They represented organizations that focus on serving people with ALS/MND in various ways such as providing care and support, leading governmental advocacy and funding research. New members from Rwanda, Bosnia, Korea and 5 others joined the Alliance in 2016. 

The Alliance meeting is the first in a week-long series of conferences on ALS care and research held annually. This year, the conferences are being hosted by the Irish Motor Neurone Disease Association (IMNDA), in partnership with the UK’s Motor Neurone Disease Association (MNDA). They consist of the Alliance Meeting, the Allied Professionals Forum and the International Symposium on ALS/MND Research. These conferences are held in a different country each year, and more than 1,200 advocates, health professionals, nurses, clinicians, researchers, neurologists and neuroscientists are expected to participate in the conferences this year. 

The Cost of Achieving Your Goals: Assistive Technology Program in Israel

It is estimated that there are as many as 500 people with ALS in Israel, and IsrALS estimates that they are reaching approximately 80% at any given time through their programming. Efrat Carmi, President and CEO of IsrALS, reported to the Alliance that successful legislative advocacy has led to the full coverage of the cost of Assistive Communication Technology to all people with ALS in Israel starting this year. 

This successful advocacy led not only to more people with ALS being able to access these important communication tools, but also to the IsrALS team conducting more than twice as many home visits on the topic. IsrALS is working quickly to grow its funding so that it can keep up with the demand coming from people with ALS who previously weren’t able to access eye gaze technology due to the cost alone. 

ACELA: A Vision of Hope in Columbia

ACELA was established by Orlando Ruiz, a person with ALS, in Columbia. The executive director of ACELA, Rocio Reyes, reported outcomes from a survey conducted on the demographics, feelings and opinions of people with ALS in Columbia. Three percent of the people with ALS they serve are younger than 30 years old and 41% are older than 65. Overall, 75% confirmed that they have and use Rilutek. Nearly all surveyed reported having good spiritual and family support, though 95% also reported having “no life plans.” 

Reyes spoke emotionally about the realities and pressures faced by people with ALS in Columbia, as well as worldwide, often having to advocate for access to care and support. “Having a good lawyer is sometimes more important than having a good doctor when you are diagnosed with ALS in Columbia,” said Reyes.

Getting a PULSE on ALS in France

Christine Tabuenca, General Director of ARSLA, the primary ALS organization in France, gave a detailed overview of a deeply organized research study being funded by their organization to elucidate the various subgroups of ALS and support the advancement of precision medicine approaches to treating ALS.

Tabuenca estimates that France has approximately 6,000 people diagnosed with ALS at any given time. Each case of ALS progresses differently making both planning for care and development of potentially effective treatments challenging. PULSE was created to help break down the disease into various subgroups based on clinical, biological, genetic, radiological, histological, electrophysiological and other measures. The program has a goal of enrolling 1,000 people with ALS in France. 

Every three months, enrolled participants will visit an ALS clinic where they will have various tests done, including respiratory and functional assessments. Additionally, every six months, researchers will offer participants the option of providing blood or spinal fluid samples along with the choice to undergo imaging such as MRI. Today, PULSE has enrolled 100 people so far. Tabuenca reported that her organization is part owner of the data produced in the study and is working closely and sharing data directly with other European projects such as ProjectMine. 

ALS Investment Fund Makes First Bet

The drug development process is a complex one in any disease indication, let alone a heterogeneous disease such as ALS. There are many different approaches being trialed both in research labs and clinical trials worldwide today. However, more funding for ALS research is desperately needed, specifically funding for the important work that happens between a lab finding and clinical trials.

Gorrit-Jan Blonk of the ALS Foundation of the Netherlands gave an update on the ALS Investment Fund, which was created under the vision of his Foundation. The fund is an investment model meant to create new opportunities to fundraise for ALS research and help speed up the process of discovering drugs and bringing them to market. The ALS Investment Fund is led in part by people with ALS, including Bernard Mueller, as well as scientific advisors from the United States of America and Europe. 

To date, the Fund has raised $10 million and earlier in 2016 announced its first investment in a company called Amalyx and is currently reviewing potential investments in another 2-3 companies, according to Blonk. The Fund is currently seeking additional companies to make investments in, as well as raising additional funds to meet its goal of $30 million.

Additional presentations were made during the two-day meeting from representatives of ALS/MND organizations based in Japan, Australia, Brazil, Iceland, Scotland, United States of America, Russian Federation, Canada and the United Kingdom.

The ALS Therapy Development Institute is a proud member of the Alliance for the past 10 years. At this year’s Annual General Meeting, a member of the staff at the ALS Therapy Development Institute, Robert Goldstein (yup, the author of this short report) as well as Sara Feldman of the ALS Hope Foundation were elected by members to its board of directors.

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NOTE FROM AUTHOR: It is a true honor to have been elected to the Board of Directors of the International Alliance of ALS/MND Associations. I hope to represent people with ALS as best as possible in this role and look forward to working together with the other members of the board and all members of the Alliance during my term. I am also thrilled to host the Alliance, APF and Research meetings in Boston, USA in 2017.

The second photo in this report is of Hiroki Okobe, a person with ALS and president of the Japan ALS Association who made the first presentation at the Alliance regarding the work around approach he takes in Japan battling ALS. There were several people with ALS/MND that attended the Alliance meetings from around the world. To Hiroki and all those with ALS/MND that made this challenging trip - it is so important that people with ALS/MND as well as care providers to people with ALS/MND are in the room for these types of discussions. Thank you to Shay (Israel), Dorthy (Switzerland), Gudjon (Iceland), Hemanji (India) and the others with ALS/MND and their care providers!

I was also excited to share information about our precision medicine program with the International Alliance and don’t recap that above in the interest of space only. Enrollment remains open for the PMP, the first program of its type in the world. Those with ALS/MND anywhere in the world are invited to learn more online at https://www.als.net/precision-medicine/

(Photo of Alliance Meeting Attendees)