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

Getting Ready for our 2017 Meetings in Boston

During the second week of April, Rachel Patterson, the Alliance’s General Manager, traveled to Boston to plan for the 2017 Alliance Meeting, Allied Professionals Forum and Symposium on ALS/MND

Rachel Patterson, GM, poses with colleagues from the MND Association, ALS Hope Foundation and ALS TDI

In Boston, Rachel met colleagues from the MND Association‘s Conference Team, as well as representatives from our 2017 co-hosts, the ALS Hope Foundation and ALS Therapy Development Institute. While on-site, they liaised with hotel staff and members of the conference AV providers, ASETS. 

Together, the team assessed meeting spaces, set lunch and dinner menus, evaluated meeting costs, planned for all of our AV needs, scheduled satellite meetings and more. Organizing the annual ALS/MND meetings can be a challenge, but our hardworking team is up for the task! 

Westin Boston Waterfront

We are excited about this year’s meeting city, Boston, and our venue, the Westin Boston Waterfront. Boston is a diverse city full of history, culture and fun. Learn more about things to do while in Boston on the city’s official website.This year’s venue, the Westin Boston Waterfront, offers accessible rooms and facilities, spacious meeting rooms, on-site dining and even a local comedy club. 

We are looking forward to seeing you in December!

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!

 

 

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