Allied Professionals Forum 2024
/The Allied Health Professionals Forum, or APF, took place this December 4-5, 2024 in Montreal, Quebec, Canada. The ALS Hope Foundation has been supporting this program for the past 20 years, starting with its second meeting which was held in Philadelphia in 2004.
Physical Therapist Sara Feldman (USA) co-chairs the event along with Rachael Marsden (UK) which 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 the PCAC members, who thanked all of the allied professionals in attendance for the work they do and the care and compassion they do it with.
We were pleased to have several members of the MDA/ALS Center of Hope and ALSHF Team, attend this year's APF. Sara Feldman, Donna Harris, Jamey Piggott, Donna Sickles, Julie Lichtman were able to attend in person with Mary Holt-Paolone and Jennifer Doto attending virtually.
Leanne Sklavenitis (PALS/Australia) was the keynote speaker for the APF and her story and attitude were both inspirational and heartwarming. We were all truly moved with Donna Sickles, RT, commenting that her presentation was one of her favorite things about the conference. "She filled my soul with hope." You can read more about Leanne's journey on her website. #beawesomeeveryday
The two days were packed full of presentations from a variety of disciplines on a wide range of topics. We will highlight a few below.
The programming began with encouragement to meet up with others and share your information and network. Don’t wait to connect! This was echoed in another presentation, The Pass it On Project, which is an informal way to connect new clinicians with those who are more experienced. Jen Doto, our new OT, has benefitted from connecting with Sara Solomon (Australia) in this way! (PTs & OTs and the SLPs networked!) Other presentations focused on this including two describing their Community of Practice, one of which was based on a previous presentation, a survey of nurses and allied health professionals in the UK and ways to address their educational needs, and a look at mental health for allied health professionals who work in the ALS/MND community.
Donna Harris, SLP, noted, “One of the best things for me about attending the International Alliance of MND/ALS conference is connecting with other speech language pathologists. It's amazing to share ideas and concerns with others in your profession who specialize in ALS. One of the first things I did was to ask our conference moderator, our own Sara Feldman, to request on my behalf to have all SLP's meet in a designated area at our break. I met 8-10 other ALS SLP's who I immediately collected names and emails for all of us to have. Already I have received a request to start a research project on EMST protocols. I have requested information from another SLP for her handouts on laryngospasm to incorporate in our clinic. I was also offered to have 1:1 voicebank training in our clinic by the amazing John Costello from Boston Children's Hospital who specializes in this area. This exciting idea sharing will continue all year long until we meet up again next year.”
There were presentations focused on symptom management and new ways to measure or augment abilities such as spasticity management, using AI for good, using digital health technology to track progression, tips on eye tracking in ALS and driving evaluations. There were also updates on NIV use and individually designed neck supports. There was a fun and engaging take on pureeing food and an excellent presentation on the Art of Living Well which looked at ways to bring creative arts into the picture.
Julie Lichtman, RD, commented “The conference featured a wide range of topics, and one session I initially anticipated would be less relevant—on nutrition and texture—ended up being one of the most engaging. I was pleasantly surprised by the passion and enthusiasm demonstrated by the speech therapists and dietitians. An example that stood out as surprisingly insightful was the simple yet effective strategy of heating food before blending to improve its consistency and ease of digestion—such a practical innovation!” She also loved the Creative Arts presentation, “I was thoroughly impressed by the creative therapies being explored for PALS, such as wheelchair marble painting and virtual reality interventions. These forward-thinking approaches demonstrate the extraordinary potential for improving quality of life for individuals living with ALS.”
Dr. Rick Bedlack kicked off the presentations with an update on the ALS Untangled website and how we as allied health professionals could use it, too. Racial disparities in both diagnosis and prognosis were discussed by the CDC. The experience of Tofersen for SOD1 and the importance of rehab as concomitant care was presented by Dr. Riccardo Zuccarino, a physiatrist in Italy. Interesting takes on Interdisciplinary Care and Palliative Care were presented.
Several presentations looked at care and support for PALS/CALS including bereavement care, moving forward after loss, and online support for adult children of PALS. One presentation was by a caregiver, Linda Levine, and was titled Angels in Anguish. It was an amazing presentation and touched all of us. Jamey Piggott wrote “One presenter who captured my mind and my heart was Linda Levine. She presented two sessions about Caregiving and Mindfulness. She spoke of the difficulties in being a caregiver and the toll it takes mentally, emotionally, and physically as well as financially. She validated the difficult life changes it causes on the caregiver and their loved one. In her sessions, she encouraged both caregivers and PALS to use their voice with a focus on expressing their thoughts, to ask for help, and to acknowledge that everything changes and takes more time. She reiterated that self-care is essential, but put no limit on what that looks like to each individual.”
Stacy Lewin Farber took part in a panel discussing Bridging the Gap: What PALS Want Researchers and Clinicians to Know (and Keep Doing Well!). This amazing panel helped to inform and educate the clinicians in the room.
Julie Lichtman, RD, shared “what resonated most deeply with me were the personal stories shared by the PALS (People with ALS), particularly Stacy, who spoke so candidly about her journey. Leanna's presentation, having traveled all the way from Australia, was especially impactful. Her perspective and the opportunity to sit with her, meet her caregivers, and hear firsthand how she navigates life with ALS, truly shifted my perspective on living with resilience and grace.”
From Todd Kelly, Patient Fellow and ALSHF PAC member, “Some highlights were the following. Dr. Bedlack is an engaging and effective speaker who always manages to cut through the jargon as he did with his session about the ALS Untangled website. CALS (and PALS) could not help but be inspired by Linda Levine, who hilariously imparted caregiver advice that she has learned while supporting her husband David. ALS Hope Foundation’s own Stacy Lewin Farber was part of strong panel of PALS, sharing their expectations of researchers and clinicians. Probably the most impressive presentation came from the keynote speaker, Leanne Sklavenitis, an Australian woman diagnosed with ALS in 2017 who has lost her ability to walk alone and her voice but whose indomitable spirit is an inspiration to all. “
Day in the Life Suite: New this year, during the Allied Professionals Forum, the Alliance transformed one of the hotel suites into an apartment for someone living with ALS/MND. It was equipped it with technology and devices that help with everyday tasks and so much more. Participants could get hands-on with the tools, and see what’s available to help the ALS/MND community. Watch Jarnail Chudge, Innovation and Technology Lead at the Alliance, provide us with a full walk-through video.
The ALS Hope Foundation was a supporter of this Suite and Sara Feldman introduced the Suite and along with Cathy Cummings, Executive Director of the Alliance. This support would not be possible without the foresight of Dr. Jeffrey Deitch, and we believe he would be truly proud of not only the suite, but also what the Allied Health Professionals Forum has become. See Sara's heartfelt words here.
Todd Kelly, Patient Fellow, noted "One element I found fascinating was the Day in the Life Suite, an actual hotel suite set up with a huge range of adaptive equipment for ALS patients. Even a quick glimpse via a video tour was eye-opening to the possibilities to enhance one’s quality of life and reduce the caregiver’s burden somewhat. If only something like this could be made accessible to PALS in a virtual reality format!"
“The Day in the Life suite was another highlight of the conference, offering a comprehensive look into the advances being made in adaptive equipment and feeding aids. It was awe-inspiring to see the strides being made in technology, and I am eager to see what the future holds as these innovations continue to evolve.” Julie Lichtman, RD
“The overarching message about the necessity of individualized, compassionate care and emotional support for each patient was profoundly impactful. It reaffirmed the importance of the holistic, patient-centered approach that we, as allied professionals, must continue to champion in our work.” Julie Lichtman, RD
