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

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!

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

Global Day Greetings from Sally Light and the MND Association

All of June is Global Awareness Month in the United Kingdom. In her video blog, Sally Light, CEO of the Motor Neurone Disease Association of England, Wales and Northern Ireland, shares her association’s Global Day campaigns and discusses their participation the Alliance and support of the fundamental rights of people with ALS/MND. Together, we are united in the fight against ALS/MND!

 

A Life Worth Living

I fell in love with Tom at the first sight, but never expected ALS could play such a big role in our life.

In 2009, I married my Mr. Right, Tom Chen. He was tall and handsome, a former all-star college basketball player; well-educated, with a Ph.D. in Operations Research from the University of Texas at Austin; successful in career, running his own IT company with more than 80 employees in Shanghai; and living with ALS for about five years. After marriage, I moved with Tom from Shanghai to his home town, Taipei. Seven years later, I’m an important member of an ALS family and passionate advocate in the local and international ALS community.

Tom and Kiki in 2009

Pictured with Tom in 2009

In April of 2012, Gudjon Sigurdsson, Past Chairman of the International Alliance of ALS/MND Associations, visited Taiwan. He encouraged Tom and me to get involved in the international ALS community. It was a tough year for both Tom and I, as we were struggling with the idea of whether to trach or not. Just one week before my trip to Chicago to attend my first Alliance Meeting, Tom and I decided to take the opportunity to continue fighting. After attending the meeting, I felt refreshed and energized with a lot of inspiration and ideas. On my trip back home, I worked out more than 20 slides for our board members on what I learned and new project ideas, and decided to come back to the meeting again next year.

Pictured with Gudjon in 2012

Pictured with Gudjon in 2012

With the publication of my own book, You Are My Breath, our story of living with ALS was known by many people around Taiwan. In the summer of 2014, Tom’s story was filmed by the Taiwan MND Association and featured on the Global ALS Day. I was invited to tell our story at the 10th Nordic ALS/MND Meeting in Reykjavik, Iceland. As Dr. Tsai Ching-Piao, founding president of our organization and former Board member of the Alliance, retired, he encouraged me to run for the position to serve the international ALS community. In December of the same year, I was elected to the Alliance’s Board of Directors.

Pictured with the Board of Directors, 2014

Pictured with the Board of Directors, 2014

On April 11-12, 2015, the Asia-Pacific ALS/MND Meeting was held by the Taiwan MND Association in Taipei, with over 440 attendees from seven countries. We got great support from three alliance members, the Japan ALS Association, MND Australia and ALS Liga Belgium. After the meeting, I assisted three ALS organizations from China and Malaysia to become Alliance Members. Due to the meeting, with the advocacy of Danny Reviers, Chairman of ALS Liga Belgium, a cross-border “Project Taiwan” was launched. We received 14 second-hand, well-maintained, sophisticated charity power wheelchairs for people in Taiwan. It aroused great attention on the importance of advanced mobility aids, which can bring independence and dignity for people with ALS. So, this idea became the theme of 2016 Global ALS Day in Taiwan.

Power wheelchair donation with Danny and Mia Reviers, 2015

Power wheelchair donation with Danny and Mia Reviers, 2015

 

2016 Global ALS Day on PALS’ right for better care and mobility aids

2016 Global ALS Day on PALS’ right for better care and mobility aids

Between the Blink of Eyes was called the Chinese version of The Diving Bell and the Butterfly. The author was Tom’s late father, Hung Chen, who was living ALS for 16 years and set the Guinness World Record for “most blinked words published”. Chen published seven books with about 350,000 words. His story inspired thousands of people around the world, including his own son. Tom has been living with a tracheostomy for three and a half years. He still can talk with his own voice. On April 23, 2016, he was elected as 2016-2018 President of the Taiwan MND Association, the first ALS leader in the 19-year history of the organization.

As Tom’s wife, caregiver and assistant, I’ll continue taking care of him and supporting him to work for people with ALS in Taiwan. As an ALS advocate, I’ll keep on striving for better ALS awareness, better care and services for people with ALS.

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