We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.
Here are some highlights from the three events – the Annual Alliance Meeting, the Allied Professionals Forum, and the International Symposium on ALS/MND – which were held in Glasgow, Scotland (UK), December 4-9.
26th Annual Alliance Meeting
During the 26th Annual Alliance Meeting, The ALS Association participated in two days of meetings with other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.
Part of the time together was spent on developing strategies for the future and identifying how collaborations could provide far-reaching access to care and services. The second day included 18 presentations and discussions, such as:
- “10 years of NDIS influencing: contributing, collaborating, and communicating to ensure early intervention and needs-based support for people living with ALS/MND” Carol Birks, MND Australia (Australia)
- “From side-of-desk to front-of-mind: Accelerating advocacy to meet the need” – Tammy Moore, ALS Canada (Canada)
- “Online support – new tools to expand need without expanding the budget” – Efrat Carmi, IsrALS (Israel)
- “Project Revoice: assistive technology to ensure people with ALS/MND are always heard” – Brian Frederick, The ALS Association (USA)
You can find a summary of the Annual Alliance Meeting presentations here.
The Annual Alliance Meeting concluded with an outstanding Ask the Experts session that allowed people living with ALS/MND and their caregivers and families to hear from some of the world’s experts and ask questions. Panelists included:
- Brian Dickie, MND Association – England, who began the session with a talk on the potential causes and contributory factors to the development of ALS/MND
- Professor Dame Pamela Shaw, Sheffield University, who spoke about key developments in ALS/MND research and looking toward the future
- Bhuvaneish Selvaraj and Dr. Arpan Mehta, both from Euan MacDonald Centre, who spoke on the importance of using stem cells in ALS/MND research
- Professor Orla Hardiman, director of the National ALS Clinic & Irish ALS Research Group, who spoke about clinical trials in ALS/MND and why it is a time for optimism in ALS/MND research
The Ask the Experts presentations can be seen here.
The International Alliance was founded in 1992 to provide an international community for individual ALS/MND associations from around the world and currently has 54 members from across the various continents.
Particularly exciting for The ALS Association was having Calaneet Balas, our president and CEO, named board chair of The International Alliance of ALS/MND Associations during the Annual Alliance Meeting.
“I’m honored and excited to take on this new role,” said Balas. “I believe the Alliance has great potential to foster more international collaborations that result in faster and more cost-effective research. We can also work together to expand access to therapies, devices, and assistive technology.”
Learn more in the press release here.
2018 Allied Professional Forum
The Allied Professionals Forum (APF) is organized by the International Alliance of ALS/MND Associations and focuses on lessons learned by health care professionals all over the world who care for and support people with ALS and their families. Here a few highlights:
Dominika Lisiecka, a senior speech and language therapist at the University of Limerick in Ireland, presented perspectives from people with ALS and their caregivers on how dysphagia (difficulty swallowing) changes the perception of food. To date, there is a relatively small pool of studies examining the everyday experiences of dysphagia in this population.
Lisiecka and her colleagues found that dysphagia has a strong emotional impact on both caregivers and people with ALS. For example, caregivers feel guilt eating in front of their loved ones with ALS who can’t eat themselves.
The fear of choking was shared between both groups. They also identified that dysphagia alters both the relationship and meaning of food in both groups, but in different ways. They also recommended that clinicians and caregivers inquire about a patient’s relationship with food, which can help guide their decisions in relation to non-oral feeding.
Marjolein Cleaver, head of the EVOLVE project at LOROS Hospice in Leicester, UK, gave some insightful information on how hospice volunteers supporting people with ALS/MND and cognitive change through the EVOLVE project can make a real impact. Once in the EVOLVE program, volunteers are trained to support patients with complex needs.
At the same time, caregivers are encouraged to use that time to attend to their own needs. Having a dedicated person who they trust and who understands the changing needs of the loved one with ALS/MND is a huge benefit to caregivers. Cleaver said volunteers can support complex patients and enjoy it. Caregivers are the real winners and can form a meaningful friendship with the volunteers.
Rachel Tams, consultant clinical neuropsychologists at the Oxford Centre for Enablement in Oxford, UK, presented an overview of what children need when a parent has ALS/MND, a topic about which very little is currently known. Children may be vulnerable to a range of psychological issues that require intervention.
Tams generously shared her experiences with families the Oxford Centre has worked with and how ALS can have a devastating effect on children. She recommended focusing on building resilience in children – resilience that focuses on finding solutions to problems and leads away from the problems themselves. She explained that this practice could help children better cope while facing the challenges of ALS.
At the end of her presentation, Tams pointed out more research needs to be carried out in this area. She hopes to collaborate with members of the audience to move this important area of research forward.
Presentations from the APF will be published here in the near future.
29th International Symposium on ALS/MND
Several patient fellows and their caregivers attended the International Symposium to report on their thoughts during and after the event.
Dr. Hiroshi Mitsumoto from Columbia University Medical Center, one of the leaders of the International Symposium on ALS/MND, kicked off the event by presenting the recent findings of the Revised Arlie House Consensus Guidelines for design and implementation of ALS clinical trials. The ALS Association is proud to be a longtime supporter of the Guidelines.
The project originated over two years ago during a workshop at the Arlie House in Virginia, in which over 140 international experts from more than 10 countries attended to discuss how to globally improve the existing set of clinical trial guidelines. The guidelines are divided into nine sections that cover the gamut of clinical trials, from pre-clinical studies and outcome measures to biomarkers (a new section) and patient recruitment and retention.
A total of 112 recommendations were made and include their associated background and rationales. During his presentation, Dr. Mitsumoto outlined the top 10 most important and practical recommendations voted on by section leaders. One of the top recommendations involved the importance of biomarkers (a method to track disease in the body over time).
The recommendation stated: “In designing and implementing ALS clinical trials, especially phase II, investigators should incorporate candidate pharmacological biomarkers (to the extent that they have been developed and validated as such) with potential to demonstrate adequacy of drug delivery, target engagement, or biological activity of the experimental therapeutic.” The full list of recommendations will be published in early 2019.
Overall, the hope is the revised guidelines will help improve clinical trial design and accelerate the development of effective ALS treatments.
Amy Laverdiere, director of new product planning and business analysis at Cytokinetics, presented a poster (EPI-29) covering IMPACT ALS, an online survey of people with ALS and their caregivers in the U.S. The survey was a collaborative effort from The ALS Association, in partnership with industry partners, including Cytokinetics, Biogen, Ionis Pharmaceuticals, and others; regulatory experts; clinicians; academic scientists; a person with ALS; and a caregiver.
The goal of the survey was to capture qualitative and quantitative data on the perspectives of people with ALS and their caregivers regarding the burden of ALS, their personal experiences, and treatment choices. The survey collectively had 1534 responses; of that, 887 were people with ALS and 647 were caregivers.
One highlight of the poster was 1107 responders indicating which outcomes were most preferred in a new treatment. Outcomes included the stoppage of disease progression; improved breathing, muscle weakness, and mobility; and the easement of overall disease burden. IMPACT ALS results will now be submitted in a peer-reviewed publication in a scientific journal, as well as in a Voice of a Patient Report for ALS to the FDA.
All abstracts from the International Symposium poster and platform presentations are published here.