The 22nd annual meeting of the International Alliance of ALS/MND Associations was held over two days, December 2 and 3, in Brussels, Belgium.  It is the mission of the Alliance to bring together the representative organizations of people living with ALS (also known as MND) from different countries across the globe.  At this year’s meeting there were 20 different countries from 6 continents present.

In 2014, the worldwide social phenomenon known as the ALS Ice Bucket Challenge created global awareness of ALS/MND and boosted the budgets of many of the member organizations. All told, according to the General Manager of the Alliance, Rachel Patterson, members reported receiving a total of $164 million (USD) through the ALS Ice Bucket Challenge.  As a result, the first topic of discussion at this year’s meeting was how this action began, how it spread, and what potential next steps the Alliance and its members may take to leverage the challenge in the future.

Robert Goldstein of the ALS Therapy Development Institute provided the opening plenary at the meeting on this topic and described its success as the result of being an organic, patient-created, and online community-led action. ALS was not the first cause to utilize an “Ice Bucket Challenge”.  However, it gained momentum after two young men, Pete Frates and Pat Quinn (both of the USA), and their friends started challenging other friends to accept or to donate to ALS research.  The challenge required a person to record a video online, usually posted via Facebook, of them pouring a bucket of water with ice in it over their head and then calling out others in their network to do the same. According to Goldstein, more than 30 million Facebook users posted, liked, or shared Challenge videos.  He then provided some thoughts to organizations seeking to conduct the Challenge again in the future, suggestions for success, and challenges to avoid.  His main recommendation was that the campaign is most likely to be successful if it remains an organic movement, not one led by a specific ALS organization. He closed by providing a brief overview of where his Institute would be investing the $3.5 million it raised as a result of the ALS Ice Bucket Challenge, and suggested that getting information out to those that gave this year about how their donations were being used would be one of the most important things that each member organization could do.

Different Countries, Different Fundraising Strategies

Three additional talks were given regarding fundraising activities and ideas; from Rod Harris (MND Victoria, Australia), Jens Spanfelt (Muskelvinfonden, Denmark) and Pablo Aquino ( ELA Argentina).  According to Harris, his organization receives many different offers from people to fundraise for it, including ones which require up-front expenses. Harris described the importance of being careful of these offers and shared a story of his organization taking a chance on one such idea which then took his organization two years to see a return. 

“We don’t accept every opportunity to raise funds. Sometimes we have to say ‘no.’  The last time we invested up front, it took us two years to recoup the expense and turn a very small profit,” said Harris.

He suggested that members focus on creating strategic fundraising programs which support individual fundraisers with their efforts, providing tool-kits and guidance.  Harris also noted that an organization should look at its responsibility to create sustainable fundraising by availing itself of various forms of investments with their capital.  MND Victoria reported having more than $4.5 million (AUD) in its various investments upon which it receives an 8% return annually. This allows his organization to serve the more than 360 people living with MND in Victoria, Australia.

The Muscular Dystrophy Association of Denmark, Muskelsvinfonden, has a unique fundraising event which raises a total of half its annual fundraising budget called Green Concert.  The annual music festival is held in eight different cities in the country each year and is organized in partnership with the brewer, Turborg. Jens Spanfelt suggested to the Alliance membership present that one of the keys to success of the event was the more than 700 person-strong volunteer base which operates it.  With a population of 5.6 million people, the country of Denmark reports having about 350 people living with ALS in its country at a given time.

“After so many years doing this, there is now really no one in Denmark that doesn’t know about the Green Concert and Muskelsvinfonden.  Pretty much everyone has either attended or volunteered,” remarked Spanfelt about the impact on the Green Concert beyond fundraising.

Awareness, Advocacy, and Service Challenges

Many people and media are asking what is being done with the funds raised by organizations as a result of the ALS Ice Bucket Challenge. In Argentina, they are using the $150,000 (USD) to begin the creation of the first specialized ALS center for the Spanish speaking population in South and Central America. 

One of the questions that a lot of people ask ALS organizations is whether or not they give support grants to people living with ALS.  Christian Lunetta, MD, of AISLA Onlus in Italy shared during the Awareness and Advocacy portion that his organization saw an influx of €2 million from the Ice Bucket Challenge and that they will be spending those funds on three aims, the first of which is to provide economic support for patients and their families.  These grants will cover the cost of direct, disease-related healthcare needs; such as a home care provider, or to rent or buy specific equipment such as assistive communication or breathing devices. Another aim of the AISLA investment will go to establishing the first ALS biobank in Italy, which will be free of charge to researchers and will gather DNA samples from PALS for study.

The decision-making process of where to invest funds was a key theme of the Alliance meeting.  According to Sally Light, CEO of the MND Association, one approach is combining information from surveys from clients served with input from board members. Her organization put out a call for feedback to its PALS and received 2000 responses; 88% of replies said they felt the windfall of funds from the Ice Bucket Challenge (the MND Association received £7 million (GBP)) should be spent on ALS research.  The next most popular suggestions from the survey were providing care and educating health professionals, among others.

The Japanese ALS Association (JALSA) gave a talk on their decision-making process, which also included outreach to its donors and PALS.  In total, according to representative Yumiko Kawaguchi, their organization raised the equivalent of $318,000 (USD).  Similar to others, the feedback they received was to invest the dollars primarily in external ALS research. Kawaguchi reported some of the challenges and limitations related to the Challenge, including that it was really hard for people to say “no” to participation. In addition, some celebrities used the Challenge to raise their own profile, and in general she thought that the Challenge didn’t achieve education, only simply awareness.

Striving to reach and provide care and other services to all people living with ALS is a goal of many of the organizations present at the Alliance’s meeting.  However, as organizations develop programming to reach out to people living with ALS/MND, there are many considerations which will impact their ability to achieve this important goal; such as cultural, language, and other differences between people within their country’s borders.  According to Erfat Carmi, CEO of IsrALS (Israel), there are nearly 600 PALS in Israel, but her organization is only able to reach 446 PALS.  Only 4% of those receiving services were ethnic Arabs. 

Carmi set out to figure out how her organization could reach the large Arab population in Israel in order to find and support PALS within that community.  Over the past several years, accomplishing this goal has been a major focus.  According to Carmi, in order to reach Arab PALS, her organization needed to address several important barriers.  On the day of her presentation, IsrALS launched a version of its website and corresponding social media channels written entirely in Arabic.  They have over the last couple of years also engaged an Arab social worker who can “literally walk from town to town” within the Arab community.  As a result of this effort, IsrALS is now serving twice as many Arab PALS as it was before it began its new outreach effort. Reaching PALS and keeping them involved in the care services that organizations offer differs greatly between the countries presenting at this year’s Alliance meeting. Two extremes were highlighted during presentations from the Russian ALS Charity and the ALS Association of the USA.

Gleb Levitsky, MD, a neurologist and the head of the Russian ALS Charity Foundation reported results of a survey of PALS served, which showed that upwards of 80% of them attend a visit with a neurologist only once, typically to receive the diagnosis.  Oppositely, 12% of PALS said they are receiving a very high level of care and attention in Russia.  Some of this polarization of care is due to a “fatalistic” belief among many Russian PALS, according to Levitsky. Due to the low level of compliance, Gevitsky doesn’t believe in the establishment of an ALS clinic in Moscow. However, his research suggests that the most appropriate model for PALS support in his country is a “combination approach”, which he described as the provision of services free from foundations like his together with services which PALS will have to pay for at local or regional medical centers and providers.

While in Russia there is a single organization serving PALS, there are many in the United States, including the ALS Association. Nicole Yarab, Director of Certified Center Programs at the ALS Association, provided a window into their services.  According to Yarab, the ALS Association employs 374 people across its 38 chapters in the United States, including 115 staff dedicated to care services.  The National Office, where Yarab is located, employs 50 people, 6 of which are devoted to care services. In 2013, the Association provided services to upwards of 15,000 people living with ALS in the USA.  About half of those people, 7,328 according to Yarab, visited one of the Association’s 43 “centers of excellence” at least once.

Additional talks were provided by several other speakers not reported on here, including a hefty discussion on the role of and appropriate ways to set up a national registry with great discussions from representatives of MND Scotland and MND Australia.  Many of the discussions centered on the barriers of getting PALS enrolled.  In Scotland, they found early on that relying on neurologists to report PALS was less than effective.  However, applying a comprehensive approach of auditing medical records and reaching out to PALS directly, MND Scotland found that between 1998 and 2004 the incidence rate of ALS in its country rose by a staggering 27% (from 2.3 to 3.0 per 100,000 people). While the reason behind this is not entirely known, the revamped registry effort has helped MND Scotland, according to Chief Executive Craig Stockton.  Of PALS which opt-in to the registry, 95% say that they will participate in research trials, which though limited in opportunity in Scotland, is a key focus of their organization.

One of the most important programs of the Alliance is its partnership and mentoring effort, which combines its more experienced member organizations with emerging ones in different countries.  One of the most experienced leaders in the program, Kathy Mitchell, provided an overview of how best to accomplish this and described a recent trip to Argentina to work with the ALS organization there on training programs for local nurses and other health professionals.  Over the past several years the Alliance has also been encouraging its member organizations to arrange regional meetings, two of which have now been established; including a new one for the Asia Pacific region to be held in Taiwan in April 2015, and the model for the regional meetings, the Nordic ALS/MND Alliance meeting, will be held in Latvia in August 2015.

Additional reports will be forthcoming from the 22nd Annual Meeting of the International Alliance of ALS/MND Associations as well as the 25th annual ALS/MND research symposium to be held December 5-7 in Brussels. You can also follow us on Twitter @ALSTDI or #alssymp for live updates.