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

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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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.

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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.

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.

In Conversation: Sally Light and Carol Birks

Alliance members are working together across the globe!
 
Watch this conversation between Sally Light, CEO of the MND Association of England Wales and Northern Ireland, and Carol Birks, National Executive Director of MND Australia and Chairwoman of the Alliance. 
 
These two executives aim to learn from one another’s experiences and programs. By sharing information, they can improve quality of life and care for people with ALS/MND in Australia and the UK.
 

This is an example of the kind of collaboration the Alliance encourages. Sally puts it best: “The International Alliance provides us with such a great opportunity to connect… There are so many things that we have in common, but also so many things we can learn from each other.”