Blog: ALS/MND Without Borders

Welcome to the Alliance's blog! Here, you'll find updates from the Alliance, along with news from our members and the global ALS/MND community. Thank you for standing united with us in the worldwide fight against ALS/MND. #ALSMNDWithoutBorders

Partnership Success Story: Asociacion ELA Argentina and ALS Liga Belgie

We are proud that our two member associations, Asociacion ELA Argentina and ALS Liga Belgie, have engaged in a partnership to exchange vital equipment for people with ALS/MND. Learn more below!  

By Dario Ryba

With great pride and emotion, the Asociacion ELA Argentina announces that on 21 February we were finally able to pick up the 10 electric wheelchairs generously donated and shipped by ALS Liga Belgie. The wheelchairs had been delayed in customs for 3 months.

It was a long, expensive and exhausting process fighting against local bureaucracy, but we finally received them. Now our patients will be able to enjoy a better quality of life.

We will organize an event along with the Ministry of Social Development that will take place between the end of April and beginning of May to assign the 10 chairs to specific PALS.

Thank you, ALS Liga Belgie, for this extremely valuable donation and permanent support!

Watch: ALS Liga Belgie sends electric wheelchairs to Asociacion ELA Argentina

Partnership Success Story: Japan ALS Association and Taiwan MND Association

By Yumiko Kawaguchi

It has been almost six years since Japan was struck by a once in a millennium 9.1 magnitude earthquake in March 2011. The historic earthquake triggered a massive tsunami which in turn caused nuclear power plant reactor accidents along the coast, including Fukushima. It was the largest earthquake in Japan’s history. 

A vast area of northeast Japan was damaged. From the day after the earthquake Japan faced severe shortages of gasoline and water. All of the ports on the pacific coast were damaged so tankers could not dock to deliver critical supplies. Within two weeks hygiene and nutrition had become serious problems, especially for those living with ALS.

Many ALS/MND patients were evacuated from hospitals in the affected areas. JALSA received calls from a neurologist in the disaster area saying that food was almost running out. We couldn’t obtain tube-feeding formulas as the factories producing them had been damaged and closed by the effects of the tsunami.

JALSA asked the Taiwan MND Association for help and they soon sent  1.46 tons of Ensure by air. Ensure is a nutritional food supplement that allows people with swallowing difficulties to get enough calories and vitamins. This shipment was held up at customs but was thankfully allowed through as a special case after the Taiwan MND Association sent the list of ingredients of Ensure.

This shipment of Ensure allowed JALSA to assist in making sure people living with ALS/MND in the tsunami-affected areas were able to have tube-feeding formula and to make sure that food would not run out. It was an emergency shipment that eased many lives in a time of disaster.


Work Trip in Atlanta

The General Manager Rachel Patterson and Administrative Coordinator Rachel Blanton spent time together on 9 – 11 January working face-to-face in Atlanta, GA. Thanks to the generosity of The ALS Association Georgia Chapter, we were able to meet the staff and work out of their office. Thank you for opening your doors to us! Rachel Patterson presented the Alliance’s mission, vision and work to the Chapter, and we were able to learn more about the work they do throughout the state of Georgia.

During the work trip, we accomplished vital in-person training, official on-boarding and housekeeping duties that allow Rachel Blanton to step fully into her role as Administrative Coordinator. We also finalized the 2017 Operational Plan and our social media strategy for the year. We are thankful for the time to sit down together and accomplish a so many tasks! 

Find out what The ALS Association Georgia Chapter is up to on Facebook and Twitter.


Thanks for joining us in Dublin!

Thank you to all who joined us for the 2016 Alliance Meeting in Dublin, Ireland.

110 members and friends attended the 24th Annual Meeting on 4-5 December. Those are record numbers! We had attendees from 30 countries worldwide.

We want to give special thanks to our 2016 host association, the Irish Motor Neurone Disease Association, and to our platinum sponsor Cytokinetics. We also appreciate the efforts of the Alliance Meeting Programme Committee, who selected this year’s abstracts.

The Alliance was proud to award 5 travel grants to members in need from Mongolia, Malaysia, India and Cuba. These members, who otherwise would not have been able to afford attendance, received £1000 to fund their travel and accommodation in Dublin, where they were able to exchange information and resources with our global network. 

During the Alliance Meeting, we enjoyed presentations from 17 member associations representing 13 countries. We were also fortunate to hear from Dr. David Taylor, the Director of Research for ALS Canada, who gave an excellent overview of the ALS/MND research landscape. 

Even if you weren’t able to be with us in Dublin, you can watch video of the Alliance Meeting online. We have recorded and archived all the presentations from the 24th Annual Meeting. View the archive page here.

Together, we are united in the worldwide fight against ALS/MND!



IMNDA logoCytokinetics


Partnership Success Story: The MND Association and Live Now Foundation

The Request

Sally Light, CEO, MND Association of England, Wales and Northern Ireland (SL): Lev and I met for the first time at the Alliance Meeting in Orlando, and he followed up to say that he was hoping to plan a visit by his team to the UK and would it be possible to see the work of the MND Association. We organised a programme over a number of days which included meeting Association staff but also a visit to an MND Care Centre run by the National health Service.

Dr. Lev Brylev, Director, Live Now Foundation/Martha Mary Medical Centre (LB): The main challenge for us was finding a strategy of expanding from one multidisciplinary team in Moscow to cover more regions. We established the Live Now Foundation in 2015 to separate the medical team dedicated to following patients in Moscow and the foundation to raise awareness, fundraise and facilitate development of the standards of care. We decided to explore the experience of the MND Association.


The Response

SL: Through a series of meetings with various members of staff, we shared ideas about our two organisations. The team from Moscow was very interested to think about how they might expand their excellent service in Moscow to other parts of Russia within the limited resources that they have available. We were able to describe our branch and group structure in which local volunteers provide support and befriending and access to Association services right across the three countries that we serve (England, Wales and Northern Ireland). We also shared some of our educational material for people living with MND and their families and other documents for health and social care professionals.

LB: Our visit was organized perfectly. We had meetings with leaders of all departments at the MND Association, and we also visited the clinical center in London. All our colleagues from MND Association were very enthusiastic during our discussions, and they were also very interested in our experience.

The Outcome

SL: The MND Association staff that met the team from Moscow found the whole experience really inspiring. As a relatively big organisation it is important to be regularly reminded of our roots – we began as a small group of people affected by MND 37 years ago. It also helped us to reflect on the work of our branches and groups and all the great things our volunteers do to ensure we have local presence in an affordable way. Hearing the presentation at the meeting in Dublin was a lovely way to be reminded of how working in partnership can bring benefit to both parties.

LB: Actually, this visit was extremely helpful. We realized that the main goal of our newly established Live Now Foundation should be reaching all patients. The MND Association shared very helpful materials. Keeping in mind the experience of the MND Association, in August of 2016 we established new branch of our Foundation in Saint-Petersburg. This trip was very inspirational; we realized that our UK colleagues were more or less in the same situation as us 30 years ago. We should work hard and share information to be successful.