There are more than 450,000 people with ALS/MND worldwide today, and in many countries there are service and research organizations specifically devoted to supporting those with the disease  and funding important research aimed at finding effective therapies and a cure. Each year, the International Alliance of ALS/MND Organizations brings together member organizations for a two-day meeting which kicks off the week of international conferences devoted specifically to ALS.

The meeting is held in conjunction with the International Symposium on ALS/MND Research which kicked off the Alliance meeting in Orlando, FL on Tuesday. In total there were about 100 people representing about 30 different organizations and two dozen countries at the Alliance meeting. The Alliance also welcomed for the first time new members from India, Columbia, Cuba and Russia, among others. This meeting report covers some of the highlights of the two-day Alliance meeting but is not comprehensive of each topic or presentation discussed. A full program of the meeting, including abstracts, is available online at the Alliance website.


Ice Bucket Challenge Investments


The ALS Ice Bucket Challenge took the world by storm in 2014 as a worldwide social media phenomenon which raised significant attention for ALS and more than $220 million in charitable donations to various nonprofit organizations, including saw $4 million of direct funding thanks to support from the Pete Frates Fund, Quinn for the Win and Affiliate Anthony Carbajal, whose video was the most watched worldwide with nearly 30 million views. Every dollar raised from the Ice Bucket Challenge by these and other Affiliates has been spent on ALS research programs already at the ALS Therapy Development Institute, including the first enrolling Precision Medicine Program in ALS. 


However, not every country approached the Ice Bucket Challenge in the same way. In Argentina, where many people don’t have access to clean tap water, The ALS Association of Argentina felt it had to be creative if it was to get involved in the campaign. Since the August event occurs during winter time in that country, Pablo Aquino and team at the Association got creative and took the challenge to the Atlantic Ocean where they challenged beach goers to accept the Seawater Challenge. Thousands of people participated and donated a total of 200,000 Argentine Pesos.


Aquino, who lost his father to ALS and currently serves as President of the ALS Association of Argentina, directed the allocation of those funds to purchase and retrofit a minibus which people with ALS could use to visit with family, travel to medical appointments, etc.  According to Aquino, transportation options for people with ALS, especially those without resources of their own, is severely limited in Argentina. The ability to purchase and retrofit a badly needed transportation option for people with ALS would not have been possible without the Seawater Challenge, according to Aquino, but he doesn’t think that the same campaign will be as effective again. He and his association are thinking about how to keep the momentum going in their country so that they can make additional purchases of equipment to support people with ALS in Argentina.


Many organizations that saw an influx of funding from the Ice Bucket Challenge have spent time thinking about how best to invest those dollars. One of the largest in Europe, the Motor Neurone Disease Association of England, Wales and Northern Ireland (MNDA), reached out to its membership, including the nearly 4000 people with MND they serve, to help make decisions about how to invest their share of the windfall from the year prior. Sally Light (@sallylight17), CEO of MNDA, provided a thorough overview of the results of her organization’s outreach to the alliance. Nearly 2000 survey responses were gathered by Light and her colleagues from people living with MND, trustees and funders of her organization. While she believes that funding research would be at the top of the list, she was surprised that an overwhelming majority, 88% of those surveyed, listed research as their top preference for where to invest the more than £7 million raised by MNDA during the Ice Bucket Challenge in 2014.


Armed with this direct feedback from those whom her organization aims to serve, as well as its trustees and funders, Light and colleagues have put together a multi-year plan for investing nearly £8.5 million, which will include the Ice Bucket Challenge funding as well as some funds from the Association’s reserves. In all, MNDA plans to invest more than £5.1M on research over the next 6 years with additional investments going to support the Association’s care, awareness and volunteer support efforts.


Building a Support Network for People with ALS in India


After training at the New York Medical School, Hemangi Sane, M.D., returned to India. Diagnosed with ALS in 2004, Dr. Sane personally saw many of the challenges in India faced by people with ALS, including a general lack of awareness of ALS, no multi-disciplinary ALS clinics and little guidance provided to people following what, in her opinion, is often a delayed diagnosisn. According to Dr. Sane, much of the focus in India is on infectious diseases, and she saw the need to create an ALS-focused organization to help address these and other challenges. Using the Hindi word for hope, “Asha,” Dr. Sane created the Asha Ek Foundation in 2011 to provide services to people with ALS and explore funding research into potential treatments.


Currently, Asha Ek supports about 120 people with ALS in Mumbai and is using technology such as Skype and Whats App to stay in touch with people with ALS afar. They are providing support to people, for example, by interpreting instructions on the use of assistive devices which are commonly only available in English and providing direction to people with ALS on how to access medications which are arduous for people to access in India. Dr. Sane and her colleagues are working to expand their reach to other metropolitan areas in India and other regions, some where access is limited and electricity is still not available 24 hours a day. She and her colleagues have also begun to explore potential therapeutic interventions, including an autologous stem cell transplant procedure. To date, 25 people with ALS, including Dr. Sane, have undergone the procedure and she believes that it has stopped her progression. Asha Ek is in the early stages of preparing a clinical trial of the procedure. 


Social Media Drives Care of People with ALS in Moscow


While much of the focus in 2014 was on the use of social media to fundraise, Dr. Lev Brylev of the Martha-Mary Medical Center (“Miloserdie”) in Moscow, Russia provided a different use of the platform: to use social media to organize medical staff and care providers. His multidisciplinary ALS care team has been using a private Facebook group to communicate with each other quickly about how individual people with ALS they treat are doing. They enter notes about their conversations and share updates with each other in real-time as they hear from their patients. Dr. Brylev believes that this approach has significantly improved the care they are able to provide because most members of the team are only part-time focused on ALS. 


Dr. Brylev estimates that there are likely about 950 people with ALS in the Moscow area alone, and from 20 different regions of the city more than 500 people with ALS have applied for support from their center since 2011. Currently, his center provides care to about 110 people with ALS. Since most members of the team are only part-time focused on ALS, the use of this social media tool has allowed him and others to share information and get guidance and support quickly from other multidisciplinary team members quickly and without having to schedule individual visits for each patient with specialists.

But, the use of social media to organize his team doesn’t stop there. They regularly use Skype to speak with each other, with patients and experts in more remote areas of the city when consultation is needed. In addition, Dr. Brylev organized the first ALS/MND patient conference in Russia and used Google Forms, Google Docs, Facebook and YouTube to run all of the logistics of the event. Due to its success, it has led to a specific fund being created by people with ALS to support its continuation in Russia.

Dr. Brylev also shared a touching story of an 18 year old man diagnosed with ALS earlier in 2015 at his clinic who seemed to have what he characterized as a rather fast-moving form of the disease requiring him to go on a ventilator only a few months later. Dr. Brylev and colleagues learned that it was his dream to become a chef. They posted a short story on Facebook asking for local chefs to post videos for the young man on YouTube and within 24 hours more than two dozen of the top chefs in the city had responded to the call, posting videos about how to make their favorite dishes. In response, the young man, who could no longer cook himself, asked his mother to watch the videos and cook each of the signature dishes for him at home.


United in the Global Battle to End ALS


Many other important presentations were made during the two-day meeting in Orlando, including presentations from Tatiana Mesquita e Silva (ABrELA), Wang Shunzhen (Beijing Oriental Rain ALS Care Center), Jennifer LaRegina (ALSA Greater Philadelphia Chapter), Jodi O’Donnell-Ames (Hope Loves Company), Marcela Santos (ACELA in Columbia), Christine Tabuenca (ARSLA in France), Bingcang Yan (Shaanxi ALS Association), Aki Yuki (JALSA), Efrat Carmi (IsrALS), Sara Feldman (ALS Hope Foundation), Kathy Mitchell and independent member of the alliance, Kiki Qu (Taiwan MND Association), Gorrit-Jan Blonk (ALS Foundation of the Netherlands) and Gudjon Sigurdsson (MND Association of Iceland).


The ALS Association served as local host to the International Alliance of ALS/MND Organizations in Orlando. Next year’s alliance meeting will occur in Dublin, Ireland and will be hosted by the Motor Neurone Disease Association of Ireland. In 2017 the ALS Therapy Development Institute will have the honor of hosting the event in Boston, Massachusetts, USA.


PS: For those looking for a truly fun and inspirational fundraising campaign currently happening in ALS today, check out Tim Michin’s Fading Symphony campaign organized on behalf of MND Australia.


The author of the report would like to dedicate this report to Rod Harris (@rodmndv) who was unable to attend this year's Alliance meetings as he is undergoing medical treatment back home.

Note: An archive of the 2015 Alliance meetings can be found online here.