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

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.”

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.

ate-flyer-updated

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.

A Caregiving Partnership Between the US and South Africa

by Melinda Kavanaugh

The Alliance  recently sponsored a cross-country family caregiving project between the University of Wisconsin-Milwaukee USA (Dr. Melinda Kavanaugh), Stellenbosh University Capetown, Baragwaneth Hospital Johannesburg (Dr. Andre Mochan), and the MND Association of South Africa (MNDA of SA), directed by Dr. Franclo Henning. This work was supported through funds from the Alliance Support Grant programme.

The goal of the engagement project was to exchange ALS/MND family caregiving data from the US national young caregiving project conducted by Dr. Kavanaugh and to learn from MNDA of SA and South African families in order to develop culturally appropriate caregiving education and interventions for ALS/MND families in South Africa.

Team members in South Africa

Team members in South Africa

The MNDA of SA and Dr. Henning worked with the US team, which included social work students and faculty, to arrange meetings with families in Cape Town, while Dr. Mochan assisted in arranging meetings with families in Johannesburg. In total, 20 families were engaged as a part of the partnership. They were seen both in clinics and in their homes. The families included patients with ALS/MND, their adult caregivers and children between the ages of 8-18 in the home.

Families discussed issues similar to those found in the US project, including the need for equipment, transportation assistance and financial help. Youth discussed the numerous and intense caregiving tasks and felt a strong sense of responsibility for care, even when it impacted school and their own well-being. During the interviews conducted in Capetown and Johannesburg, both parents and youths described the need for in-person support and educational programming – for all family members.

The data collected through this partnership project has both immediate and long-term implications as the MNDA of SA develops care and support resources for families in South Africa and as clinical services and facilities continue to grow. Participating in the project also provided an opportunity for both the US and South African teams to learn from each other and build relationships and collaborations around ALS/MND and caregiving across different cultures and countries.

The collaborators are now planning a symposium next summer to present this project to medical, social work and other allied health professions in South Africa – raising awareness of ALS/MND needs and best care practices for the patient and family.

Thanks to the Alliance for supporting this cross-cultural partnership!