International Alliance of ALS/MND Associations Meetings

The International Alliance of ALS/MND Associations held their Annual Meeting November 28-30, 2022 in San Diego, California this year with 241 representatives (136 in person/105 virtual) from 21 different countries. The ALS Hope Foundation has been an active member of the Alliance since 2001 and this year Dr. Terry Heiman-Patterson, 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. See the video here. Special thank you to Stacy Lewin Faber and Will Steuber who represented the ALS Hope Foundation.

 Program chair and PALS Gudjon Sigurdsson (Iceland) virtually welcomed everyone and kicked off the presentations from members around the globe, a few we will highlight here.

Dr. Melinda Kavanaugh (USA) presented on the work she and her colleagues from South Africa, (Dr. Andre Mochan, Sheila Slabber and Prof. Thobeka Nkomo) are doing on developing young carer education and support programs. Dra. Tatiana Mesquita e Silva (Brazil) presented the work of ABRELA over the past two years and shared their “Clinical Protocol: Therapeutic Guidelines” they recently published. Dr. Hemangi Sane (India) presented the results of an online survey Asha Ek Hope had done on the impact of Covid 19 infection and vaccination on people with ALS/MND in India.

The ALS Association presented on using GIS to locate clinics, strategies to increase the numbers of clinical trials, and the CDC Registry. Learn more about the Registry and sign-up here.

The influence of the voices of people living with ALS/MND on advocacy in many areas was presented by several organizations including ABRELA, MNDA, ALSA, ALS Canada and MNDA Scotland. Alper Kaya (PALS/Turkey) also presented on how they were able to use the results of the Alliance’s Fundamental Rights Survey to influence the Turkish government to make changes in care, including starting a multidisciplinary clinic.

We then heard updates from the Scientific Advisory Council, or SAC, which included an excellent panel discussion by chair Dr. Gethin Thomas (Australia), Dr. David Taylor (Canada), Dr. Kuldip Dave (USA), and virtually Dr. Andriano Chio (Italy). Updates from the Innovation and Technology Advisory Council, or ITAC, was provided by Phil Green (PALS/USA) and virtually Jarnail Chudge (UK) on their focus on Voice Banking. Finally, the PALS and CALS Advisory Council, or PCAC, provided their updates. PCAC Chair, Sara Feldman (USA), Phil Green (PALS/USA) and Felipe Ocampo (PALS/Colombia) were in-person, Angelique van de Lit (PALS/Netherlands) and Bruce Virgo (PALS/Scotland) were virtual.

We also heard from Japan, Belgium, Switzerland, USA, Canada, Scotland on various programs, organizational development, advocacy, and clinical care their organizations are working on or providing. Dr. Heiman-Patterson (USA) presented on the ALS Hope Foundation’s Hope Bridges program, giving other organizations the blueprint to develop a similar program of their own.

The Humanitarian Award was announced during the meeting, and our friend Sally Light, the retiring CEO of the MNDA (UK) received the award.

Following the conclusion of the Alliance Meeting, the ALS/MND Connect took place with speakers Phil Green (PALS/USA), Dr. Eugene Brandon (USA), Dr. Colleen O’Connell (Canada), Dr. Angela Genge (Canada), and Dr. Caroline Ingre (Sweden).  

The Luncheon this year was sponsored by the ALS Hope Foundation, Fundela, and Les Turner ALS Foundation and we heard from speaker Dr. Colleen O’Connell (Canada) on “The Right to a Quality of Life.” Jamey Piggott, Executive Director of the ALS Hope Foundation, welcomed everyone to the luncheon and quoted Walt Whitman to encourage their participation. "Be curious, not judgemental." 

 Following the luncheon, the Allied Professionals Forum, or APF, co-chaired by Sara Feldman (USA) and Rachael Marsden (UK), began. The APF brings together allied health professionals from around the globe and this year people joined both in-person and virtually. We were warmly welcomed virtually by PCAC members, Phil Green (USA), Gudjon Sigurdsson (Iceland), Bruce Virgo (Scotland), Felipe Ocampo (Colombia) and Alper Kaya (Turkey) who thanked the allied professionals in attendance for the work they do and the care they put into it.

Then launched a panel on the history and evolution of the multidisciplinary clinic. Dr. Heiman-Patterson (USA) and Dr. Orla Hardiman (Ireland) joined Sara Feldman (USA) and Rachael Marsden (UK) on the panel, which was moderated by Dr. David Taylor (Canada).

Donna Harris, the Speech Language Pathologist at the MDA/ALS Center of Hope, joined us for the APF, and while there the SLPs held an impromptu international meeting. And Speech Language Pathologist Richard Cave (UK) was the recipient of this year's Allied Health Professionals Award! He is a champion for making voice banking accessible to everyone.

The day ended with an amazing global Walk to Defeat ALS/MND. 

The programming then continued over the next two days with excellent presentations on all aspects of care. The attendees were both in-person and virtual and were enthusiastic and engaged. See the full program here.

Highlights:

There were several presentations on resources available to clinicians and PALS/CALS including David Meissner (USA) presenting on Your ALS Guide and Anne Marie Doyle (USA) on Les Turner ALS Foundation’s My Decision Making Tool.Guidelines for healthcare professionals working with people with complex communication needs was presented by Lisa Bruening and a Rapid Access Communication Kit by Alisa Brownlee, both USA/ALSA.

 Models of support for programs or equipment included the Wheelchair Alliance presented by Nick Goldup (UK); the AISLA model for providing AAC in Italy by Massimiliano Filosto (Italy); establishing a neuro-palliative care clinic by Gargi Kumar (India); and an ALS Canada support group model by Kim Barry (Canada).

Two fantastic presentations involved AT in creativity including DuoRhythmo by Ivanyi Balazs (Denmark) and making videogames more enjoyable for people with MND by Ben O’Mara (Australia). 

In the section on Multidisciplinary care we learned about "Positive Tiredness": A Concept to challenge fatigue management for people with ALS/MND from OT Helen Carey (USA); Eating with Dignity from Gudlag Gisladottir (Iceland); neck weakness impacting walking from Stephanie Zhao (Australia); understanding bowel habits from Jan Clarke (UK); and sex and intimacy from Joanna Nunez (USA). Voice banking was presented by our APF awardee, Richard Cave (UK) as well as Rachel Robinson (Australia).

Two networking/support groups for allied health professionals or researchers were presented, showing the need for ongoing education and sharing of knowledge. MND professional’s community of practice by Jennifer Bedford (UK) and the research staff satellite meeting by Tommy Bunte (Netherlands).

Mental Health and Online support presentations included: Making sense: An online meaning centred psychological intervention for individuals with MND from Sandra De Moree (Netherlands); support systems for children, Lily Cola (USA); E-learning on end-of-life care, Liesbet Casier (Belgium); conversations about death and dying from Amber Johnstone (USA); and developing a web resource for individuals with inherited MND by Jade Howard (UK).

Allison Bulat (CALS/USA) gave an excellent presentation on Strengthening the Paradigm of Science and Patient Collaboration. 

 There was also a panel How to break the news in ALS/MND with Dr. Melinda Kavanaugh (USA), Dr. Angela Genge (Canada), Dr. Colleen O’Connell (Canada), moderated by the Executive Director of the International Alliance, Cathy Cummings (CALS/Canada) that stimulated discussions on breaking the news of not only the diagnosis but every difficult decision along the way.

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.