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
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 ALS.net.
ALS.net saw $4 million of direct funding thanks to support from the Pete Frates Fund, Quinn for the Win
and ALS.net 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 ALS.net 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
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.