International Alliance of ALS/MND Associations Meeting and Allied Professionals Forum
/The International Alliance of ALS/MND Associations held their Annual Meeting December 2-3, 2023 in Basel, Switzerland with representatives from 26 different countries in attendance. The ALS Hope Foundation has been an active member of the Alliance since 2001 and this year Jamey Piggott and Sara Feldman were honored to attend the meeting in person.
Calaneet Balas (USA), Chair of the International Alliance, welcomed the attendees, then the programming began with a tribute to people living with ALS/MND around the globe with the March of Faces video. Special thank you to Wendy Hendrickson and Greg Heydet who represented the ALS Hope Foundation.
Program chair and PLWALS Gudjon Sigurdsson (Iceland) and Cathy Cummings (Canada), Executive Director at the International Alliance, welcomed everyone and kicked off the presentations from members around the globe, a few we will highlight below.
We heard from several organizations with updates on their work over the past year including FightMND, Asociación ELA Argentina, MNDA, the ALS Association, Spain and MNDA Scotland, all of whom shared insights and experiences that may be applicable to other organizations. Several shared specific challenges and how they are meeting them, including Colombia’s partnership with ALSA for communication devices and Dr. Melinda Kavanaugh (USA) presented on the Global Neuro Y Care program.
Several support programs were presented including End the Legacy’s peer support for the Genetic ALS/FTD community, Denmark’s support interventions targeting people with ALS and their caregivers, and Israel’s support groups. Guides to help people navigate ALS were presented including the Dutch ALS Guide, My ALS Journey from ALSA, and the ALS/MND Clinic Locator. We heard about the life of a person living with ALS in Japan and went through her day with her; we heard from Alper Kaya (PALS/Turkey) about the earthquake in Turkey and how it affected PALS; we heard about differences in research and treatment access in different areas of the globe; and we heard the voice of people living with ALS/MND and their caregivers woven throughout the two days.
The PALS and CALS Advisory Council, or PCAC, provided an update on what they have accomplished over the past year, with a focus on the Alliance’s Fundamental Rights Survey. PCAC Chair, Sara Feldman (USA), Gudjon Sigurdsson (PALS/Iceland), Ajay Gupta, (CALS/India), Bruce Virgo (PALS/Scotland) and Paula Trefiak (PALS/Canada) were in-person; Angelique van de Lit (PALS/Netherlands), Albert Koo (PALS/Malaysia), Norman MacIsaac (PALS/Canada), Felipe Ocampo (PALS/Colombia) and Orlando Ruiz (PALS/Colombia) were virtual.
The Humanitarian Award was announced during the meeting, and we were pleased to learn that Dr. Lucie Bruijn received the award.
A highlight of the meeting was the preview of the animated film, Luki and the Lights, which tells the story of a robot with ALS.
Following the conclusion of the Alliance Meeting, the ALS/MND Connect took place with amazing speakers Dr. David Taylor (Canada), Dr. Nick Cole (UK), Dr. Kuldip Dave (USA), Dr. Ammar Al-Chalabi (UK), Dr. Gethin Thomas (Australia), virtually Dr. Andriano Chio (Italy) Dr. Jeanine Heckmann (South Africa) and Dr. Nadia Sethi (CALS/USA) from the Scientific Advisory Council, or SAC and moderated by Allison Bulat (CALS/USA).
There were presentations followed by a discussion/question period. The video can be viewed here.
It was both informative and inspiring to learn from other organizations around the globe.
#AWorldUnitedAgainstALSMND #ALSMNDWithoutBorders
The Allied Professionals Forum, or APF, co-chaired by Sara Feldman (USA) and Rachael Marsden (UK), then took place over the following two days. The APF brings together allied health professionals from around the globe and this year over 400 people joined both in-person and virtually. We were warmly welcomed virtually by PALS and CALS Advisory Council (PCAC) members, Felipe Ocampo (Colombia), Paula Trefiak (Canada), Gudjon Sigordsson (Iceland), Alper Kaya (Turkey), Bruce Virgo (Scotland), Angelique van der Lit (Netherlands), and Orlando Ruiz (Colombia) who thanked all of the allied professionals in attendance for the work they do and the care and compassion they do it with. It was a heartfelt reminder to everyone in the room why we do the work we do.
Sarah Solomon (Australia) and Helen Carey (USA), both Occupational Therapists, started the APF with a provocative discussion on Embracing Risk: Enabling doing for people living with ALS/MND, which set the stage for the next two days. There was a real sense of how can we, as health professionals, stretch beyond our usual boundaries and enhance the lives of people with ALS and their caregivers.
The Luncheon this year was sponsored by the ALS Hope Foundation, and Jamey Piggott, Executive Director of the ALS Hope Foundation, thanked everyone for their work and participation. He reflected that the audience lived by Dr. Dale Turner's words, "Extend Yourself."
Donna Harris, the Speech Language Pathologist at the MDA/ALS Center of Hope, joined us for the APF. She was pleased to note there was a presentation on oral care.
Dr. Deirdre Murray, a Research Fellow and Clinical Specialist Physiotherapist in Neurology at Beaumont Hospital, Dublin, was the recipient of this year's Allied Health Professional Award for 2023. This award was initiated in 2018 and recognizes recognize an individual committed to providing exceptional care to people with ALS/MND and the sharing of this knowledge.
We also managed to get all of the previous awardees together for the first time!
The APF was an amazing meeting over two days with excellent presentations on all aspects of care as well as a look to the future of technology and the addition of experiential presentations. Here are some of the highlights of the two days:
There was an excellent presentation from G Gisladottir, G Serrero, and F Mancuso (Iceland) on Eating with Dignity. They take food and puree it to the appropriate consistency for the person, then shape it in molds so it looks like actual food. And it tasted delicious!
There were exciting updates to assistive technology including J Chudge and W Gregory’s presentation on using AI and gaming for quality of life; updates to message banking and where the state of the art is by J Costello (USA) and also N Jackson (Australia); the use of eye-gaze to drive a power wheelchair by L Hills, M Hevicon, and S Fielden (UK); Experiential Apps were demonstrated by R Cave (UK) which included amazing software for making digital art and voice recognition for people with significant difficulty speaking/dysarthria. We will be watching for those to come out!
Several rehab focused presentations were done including an excellent one on ALS and Exercise by C Radcliffe (Australia) and one on healthy teeth and oral care that Donna Harris was pleased to see by M van der Linden (Amsterdam). S Brumby (Australia) gave both a heartfelt and informative presentation on choosing NIV, what the person needs to know ahead of time. One of the PALS in the room said it was the first time he had heard it put that way, and thanked her.
We also heard from D Meissner (USA), our friend at Your ALS Guide on their most recent work. Jamey also commented on the Expanding Access to Genetics Education, Counseling, and Testing: Innovations in ALS Genetics Care by P Wicks (UK), L Dratch and L Webb (USA). M Kavanaugh (USA) told us more about how children are experiencing caregiving. Really, there were so many excellent presentations, it is hard to highlight just a few!
It was a fantastic week of reconnecting with old friends and making new ones. The air of friendship and collaboration was palpable in the room. We all left with new knowledge and renewed commitment.
