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

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.


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.


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!

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

PALS Rights in Argentina

On June 15, students from the “Interpreting 1” course at the Universidad de Buenos Aires participated in the filming of an awareness spot for Alliance member Asociación ELA Argentina (The ALS Association of Argentina).

The students read the Fundamental Rights for People Living with ALS/MND in English, and then translated it into Spanish in class.

The Secretary of the Asociación ELA Argentina, Pablo Aquino, who also graduated as a Sworn Translator from the same university, gave a short presentation on ALS and the history of ELA Argentina, which was also interpreted by the students using the specific microphones and receivers for this kind of conference.

This video spot was shared through ELA Argentina’s YouTube, Facebook and Twitter channels.

We are proud of the work our members are doing to promote ALS/MND awareness and the rights of people with ALS/MND worldwide!