Alliance News

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.

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.

Rachel and Carol Travel Across the Asia Pacific Region

This August, our General Manager (Rachel Patterson) and the Chairwoman of the Board (Carol Birks) had the opportunity to travel throughout the Asia-Pacific region. During their journey, they visited our member associations, toured ALS/MND clinics, learned about the services available in other parts of the world and connected with the regional ALS/MND community. Here are some highlights from their trip!

Kuala Lumpur, Malaysia (August 18-23)

Rachel and Carol attended the PACTALS Meeting at the Kuala Lumpur Convention Centre, which coincided with the 15th Asian and Oceanian Congress of Neurology. There, they caught up with representatives from members The Japan ALS Association, MND Malaysia, Asha Ek Hope Foundation, MND Australia and more. They also met friends from Indonesia and Myanmar who are working to establish associations and become part of the Alliance’s network.

Rachel and Carol pose with friends from Malaysia, Indonesia and India

Rachel and Carol pose with friends from Malaysia, Indonesia and India

After PACTALS, Rachel and Carol spent extra time in Kuala Lumpur visiting the offices of member MND Malaysia, an association that joined the Alliance as a Full Member in 2015. At the university hospital in Kuala Lumpur, Rachel and Carol toured the neuro-palliative unit where people with ALS/MND have access to compassionate care during hospital admissions. They learned from MND Malaysia’s clinical team, who are hoping to continue developing multidisciplinary services for people with ALS/MND in their country. They also got to know the network of volunteers that supports the team and helps MND Malaysia raise awareness and funds.

They were joined by representatives from a developing association in Indonesia, led by organizer Dr. Premana Premandi, a person living with ALS/MND. This meeting helped facilitate cooperation between the Indonesian group and Alliance members MND Australia and MND Malaysia, who can provide resources and mentorship.

Rachel and Carol pose with Dr. Ee Chin Loh and her dedicated team of clinicians and volunteers

Rachel and Carol pose with Dr. Ee Chin Loh (second from right) and her dedicated team of clinicians and volunteers

Seoul, South Korea (August 24-27)

From Kuala Lumpur, Rachel and Carol flew to Seoul, South Korea. There, they visited a clinic at Hanyang University Hospital, directed by Dr. Seung Hyun Kim. They met the multidisciplinary ALS/MND clinical team and learned about cutting-edge treatments being developed in South Korea. They also shared the work and vision of the Alliance with the clinical team.

Rachel and Carol pictured with Dr. Kim and his multidisciplinary ALS/MND team

Rachel and Carol pictured with Dr. Kim and the multidisciplinary ALS/MND team at Hanyang University Hospital

The next day, Rachel and Carol had the privilege of meeting with representatives of the Korean ALS Association (KALSA), led by President Dr. Jung-Joon Sung. They learned more about the organization’s work to support people with ALS/MND in Korea, fund research efforts and raise public awareness. They also invited KALSA to become an active member of the Alliance. We are happy to report that KALSA’s membership application is now in-progress, and we hope to welcome them to the Alliance soon! Maybe we will even see our new friends in Dublin.

Rachel and Carol are joined by representatives from KALSA, including their President Dr. Sung (back center)

Rachel and Carol are joined by representatives from KALSA, including their President Dr. Sung (back center)

On the final day of their visit to Seoul, Carol and Rachel attended an educational patient conference hosted by Dr. Kim and his team at Hanyang University Hospital and were honored to connect directly with people living with ALS/MND and their caregivers.

Taipei, Taiwan (August 28-30)

Next, Rachel and Carol were off to Taipei, where they were welcomed by Board Member Kiki Qu and her colleagues from the Taiwan MND Association. At Taipei City Zhongxiao Hospital, they had the privilege of meeting with Tom Chen, the President of the Taiwan MND Association (also Kiki’s husband), along with hospital administrators, clinicians, media representatives and members of the city government. You may read a full list of the honorable attendees here.

Rachel delivered a formal presentation on the work of the Alliance, while Carol presented on the work of MND Australia. Then, Rachel and Carol learned about how ALS/MND services are delivered in Taiwan and the role of the Taiwan MND Association in patient care. They also learned about the association’s holistic and spiritual services for people with ALS/MND, which help them achieve their goals and find hope and peace.

 

A big audience during the meeting at Taipei City Hospital

A big audience during the meeting at Taipei City Hospital

While at Taipei City Hospital, Rachel and Carol also had the opportunity to visit the multidisciplinary ALS/MND clinic. They met a dedicated clinical team and learned more about all the services and programs available to people living with ALS/MND. They saw firsthand how the efforts of the clinical team, paired with the advocacy work of the Taiwan MND Association, have improved care and quality of life for people with ALS/MND in Taiwan.

Rachel and Carol pose with Kiki (front right) and members of the ALS/MND clinic team at Taipei City Hospital

Rachel and Carol pose with Kiki (front right) and members of the ALS/MND clinic team at Taipei City Hospital

During their visit, Rachel and Carol also had the honor of meeting with people with ALS/MND and their families. They had a chance to see and tour special rooms at Taipei City Hospital that have been outfitted to meet the needs of people with ALS/MND during hospital stays. Their time at the hospital was covered by Taipei Times, China Times and HiNet as well as the local government.

Rachel and Carol meet with the husband of a person living with ALS/MND in Taipei in her hospital room; here, he holds book written by his wife using assistive technology

Rachel and Carol meet with the husband of a person living with ALS/MND in her hospital room; here, he holds book written by his wife using eye-gaze technology

That afternoon, Rachel and Carol visited the offices of the Taiwan MND Association in downtown Taipei and heard the stories of staff members, volunteers and people living with ALS/MND and their carers, who are all part of the association’s network of supporters.

Rachel and Carol stand united with the Taiwan MND Association's team

Rachel and Carol stand united with the Taiwan MND Association’s team

Perth, Australia (August 31-September 2)

After a busy visit in Taipei, Rachel and Carol traveled to Perth, Australia, where they were met by their colleague Pam Aston from the MND Association of England, Wales and Northern Ireland and a local representative from the state association of Western Australia. The group toured the Perth Convention and Exhibition Centre (PCEC) and nearby accessible hotel rooms, scouting Perth as a potential venue for the 2019 Alliance Meeting and Symposium on ALS/MND, hosted by MND Australia. Stay tuned for more information on upcoming venues!

Carol and Rachel pose with Pam Aston (center) overlooking the PCEC

Carol and Rachel pose with Pam Aston (center) overlooking the PCEC

Rachel and Carol would like to thank their generous hosts in every city. Their travel across the Asia Pacific region allowed them to build community and learn more about the work our members do across the world. Thank you for being a part of our Global Team! #ALSMNDWithoutBorders

Global Day Message from the General Manager

Dear Members and Friends,

Last week, we were so glad to see our members from around the world doing incredible work on behalf of people with ALS/MND to mark Global ALS/MND Day.

Now that the week of Global Day activities has come to a close, I have reflected on our Global Day advocacy campaign focusing on the fundamental rights of people with ALS/MND.

Take a look at the video message below to hear some of my thoughts. I am proud to be part of the Alliance. We have many differences, but we are united in the fight against ALS/MND.

Warm wishes,

Rachel Patterson, General Manager

International Alliance of ALS/MND Associations