Alliance News

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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Upcoming Meetings: Dublin 2016

The Convention Centre Dublin

We are looking forward to the upcoming ALS/MND Meetings on 4-9 December at The Convention Centre Dublin.

Special thanks to this year’s host, the Irish Motor Neurone Disease Association (IMNDA), and to our platinum sponsor, Cytokinetics.

Here is a run-down of this year’s events:

Annual Alliance Meeting: 4-5 December 2016
Liffey Hall 2, Convention Centre Dublin

This meeting for members and friends of the Alliance will cover topics related to the programming and governance of ALS/MND associations in different parts of the world. Member associations from around the globe come together, and we encourage them to share information and resources.

Registration costs £220 for members and £250 for observers. Refreshments, lunch and dinner are provided on both days; registrants can also bring guests to dinner each night at an extra charge per guest ticket. Register here. View this year’s program here.

Ask The Experts: 5 December 2016, 14:30-16:30 GMT
Liffey Hall 2, Convention Centre Dublin

Every year, we invite the host association to organize a free, open Ask The Experts event, which allows local people living with ALS/MND and their carers to hear from experts and then ask questions in an open forum. This year, the IMNDA has invited 3 prominent experts in the field of ALS/MND research to give presentations to our audience: Dr. Jeremy Shefner, Dr. Jonathan Glass and Dr. Jan Veldink. View this year’s agenda here.

This event is FREE, and no registration is required. If you can’t be there in person, you can live-stream or watch the recorded video after the event. If you join us “live” online, you can also ask questions via Twitter by tagging @alsmndalliance

The Allied Professionals Forum: 6 December 2016
The Liffey A, Convention Centre Dublin

The Allied Professionals Forum (APF) is a one-day educational and training forum for ALS/MND healthcare professionals. This forum offers clinicians from around the world an opportunity to share ideas on good practice in the daily management of people with ALS/MND. Every year, this meeting is generously supported by The ALS Hope Foundation. Refreshments and lunch are provided.

Registration costs £100. Register here. View this year’s program here

International Symposium on ALS/MND: 7-9 December 2016

The Symposium is organized by our friends and colleagues at the Motor Neurone Disease Association of England, Wales and N Ireland. The Symposium is the single largest medical and scientific conference on ALS/MND. For more information or to register, visit www.mndassociation.org/symposium.

Ask The Experts 2016

Join us for the 2016 Ask The Experts session! See the flyer below for details.

Please note: This event will be live-streamed, free of charge. Community members are invited to participate online if they can’t be with us in Dublin.

If you wish to share this flyer, click here to download the PDF.

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NEALS 2016

Our General Manager, Rachel Patterson, had the privilege of attending the 15th Annual Meeting of the Northeast ALS Consortium (NEALS) on October 4-7, 2016 in Clearwater Beach, Florida.

NEALS’ mission is to translate scientific advances into new treatments for people with ALS/MND as rapidly as possible. At this year’s meeting, researchers from North America (and some from abroad) presented on important advances in clinical ALS/MND research. View a schedule of the NEALS events here.

Some of the important research presented in 2016 included a promising update on the Brainstorm cell therapy trial, presented by Dr. James Berry; initial results showing that Botulinum Toxin B (mysticol) may be an effective tool to combat sialorrhea in ALS/MND, presented by Dr. Carlayne Jackson; and important recommendations from clinicians and biostatisticians on how we might improve the ALSFRS-R measurement tool or carefully begin to use historical controls to reduce the size of the placebo group in double-blind clinical trials.

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Rachel (center) pictured with Alliance delegates Sara Feldman (left) and Calaneet Balas (right)

Rachel also had the opportunity to connect with member delegates while in Clearwater. Calaneet Balas of The ALS Association and Sara Feldman of the ALS Hope Foundation were in attendance, along with many other Alliance friends, supporters and industry partners.

 

Thanks to the Co-Chairs of NEALS, Dr. Terry Heiman-Patterson and Dr. Jonathan Glass, for extending Rachel a generous invitation to attend NEALS, and for hosting an informative, collaborative research conference. We look forward to next year!

If you’d like to see our specific updates from NEALS, check out the Alliance’s twitter feed.