2025 Annual NEALS Meeting

The 2025 Annual Northeast Amyotrophic Lateral Sclerosis Consortium® (NEALS) Meeting was held in Clearwater, FLA this October 7-10, 2025. This year marked the 30th year of NEALS, “three decades of collaboration, innovation, and commitment to advancing ALS research,” and the ALS Hope Foundation was noted to be one of the early supporters of the consortium.

Before the official start to the meeting, there a day filled with committee meetings, educational events, and Outcome Training for the clinical trials. Kathleen Hatala, Sara Feldman and John Furey attended these meetings and Dr. Terry Heiman-Patterson was a faculty member of the Clinical Learning Research Institute (CRLI).  The evening ended with a screening of Dr. Rick Bedlack’s documentary, Stitching Strength.

FIND OUT MORE ABOUT the documentary STITCHING STRENGTH here.

Day 1 started with Dr. James Berry and Dr. Jinsy Andrews reviewing the past 30 years of NEALS. NEALS was founded as an independent, non-profit group of clinical sites in the Northeast US that collaboratively conducted research and now consists of international clinical research centers. The presentations focused on research updates from NEALS affiliated trials and lighting science talks co-chaired by the Scientific Advisory Board.

The day concluded with the first poster session.

We are pleased to note that we had several members of the clinic and lab in attendance at the meetings and presenting posters.

Dr. Terry Heiman-Patterson chairs the abstract committee and Dr. Lyle Ostrow is a member and a judge on the committee.

All of the poster presentations will be included at the end.

Day 2 began with an excellent session on Partners in Discovery: Research Ambassadors Driving Change which was chaired by Dr. Rick Bedlack and included Dr. Terry Heiman-Patterson as a panelist along with ALS Advocates, Andrea Lytle Peet, John Peffer, and Jean Swidler. They each told their story and answered questions from the audience on what being a Research Ambassador means to them.

Dr. Terry Heiman-Patterson then lead the next session on the ALS Better Care Act Update. The afternoon sessions focused on future directions in treating both sporadic and genetic ALS. The day concluded with the second poster session.

Day 3 began with a discussion on Uniting for Impact: Updates from the NEALS ALS Organizations Forum. Our Executive Director, Jamey Piggott, attends these quarterly meetings. This was followed by the Awards presentations and the ALS Residence Initiative (ALSRI) was the recipient of the Gupta Family Endowed Prize for Innovation in ALS Care. Steve Saling, CEO of ALSRI, and Barry Berman, CEO of Chelsea Jewish Lifecare accepted the prize.

The final session of Platform Presentations was chaired by Dr. Terry Heiman-Patterson.

It was an excellent conference overall with three amazing days of presentations, panels and posters. Three decades after it began, NEALS remains a place where the research keeps moving forward and the collaborations run deep.

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POSTERS:

We are pleased to be able to share with you the work that was presented at the NEALS Symposium that came from the work being done in the Dr. Robert Sinnott Lab. These studies build directly on the invaluable contributions of participants in our Natural History Study and ALS Tissue Bank. 

Several posters we as the result of collaborations with others. 
"ROAR-DIGAP: A Widely Inclusive, Largely Virtual Pilot Trial Utilizing DIGAP (Deep Integrated Genomics Analysis Platform) To Personalize Treatments" is work we are doing with Dr. Rick Bedlack at Duke. Others included the work done with Northeast Amyotrophic Lateral Sclerosis (NEALS) Biorepository and Evaluating the Precision of Quantitative Voice Characteristics as Endpoints in ALS Clinical Trials with the Healey Platform Trial data.

We continue our collaboration with Dr. Hasan Ayaz at Drexel University for our research on Brain Computer Interfaces. 

And designing a cervical support that delivers improved comfort remains a project, but is one step closer to a product!

Veteran ALS Action Committee team member Mandi Bailey presented a poster at NEALS, "Navigating Complex Conversations in ALS."  

Cassandra Haddad presented End the Legacy’s poster, "Informants (Study Partners) in Presymptomatic ALS Research: Highlighting uncharacterized and uncommunicated potential risks."

“I thought the NEALS experience was amazing. I think it reinforced why we do what we do, and I was pleasantly surprised by the overwhelmingly positive feedback we got for the neck brace.  At NEALS I presented 3 different posters on the topics of a 3-d printed entirely customizable neck brace of pALS with dropped head syndrome, the prevalence and survival outcomes of pALS with and without cognitive and behavioral impairment, and the accuracy and effectiveness of using different conditions for brain-computer interface usage. 

Meeting with everyone, especially patients and other researchers was the best part of NEALS for me as I think collaboration and getting our research out there is the key to helping pALS as quickly as possible, while maintaining a higher standard of care. I am deeply humbled and thankful for being able to advocate for, and work with such an amazing group of people, and I am excited for the progress we will all make between now and next NEALS.” Josh Miller

“As a first-time attendee, I was deeply moved by the stories shared by people living with ALS and inspired by the passion and dedication of everyone working to improve their lives. It was exciting to learn about emerging advances in research and diagnosis, including innovative eye-based technologies that may help detect disease earlier. I also appreciated the opportunity to connect with leaders from across academia and industry and to hear about new collaborative efforts shaping the future of ALS care. Our team is developing noninvasive brain–computer interface technologies to support natural communication and greater autonomy, and it was inspiring to see how this work aligns with the NEALS mission. I am grateful to Dr. Heiman-Patterson for welcoming us into this community and to everyone who shared valuable insights throughout the meeting.” Bartu Atabek

18th Annual Hope Walks for ALS Family Fun Day

Sunday, September 14, 2025 was a gorgeous day at Temple’s Ambler Campus, full of sunshine, love and hope! 

What an amazing day for a walk, for meeting up with old friends, for making new friends, and for supporting an awesome cause!

Because of you, we raised over an astounding $163,000 to support ALS research and patient care. Thank you to all of our teams, all of the walkers/rollers, all of our amazing volunteers, everyone who donated or provided a raffle item, and our sponsors!

We are so incredibly grateful to all of you!

This year, we had the honor of hosting Bob Spurrier as our Walk Chair. Bob is a retired owner of a Medical Device Company, a husband, a father, and a grandfather of three adorable grandchildren. He shared his story of his journey with ALS, the ALS Hope Foundation and the True North Men’s Group, reminding us of the importance of our mission and the impact of the support we provide.

“ALS has changed us in many ways, however, it will never define who we are.”

~Bob Spurrier

We have to acknowledge all of the amazing teams that signed up and showed up in force!! Special shout out to Team Always Loving Stacy and Team Spurrier!  They battled back and forth between the top spot until the cutting of the walk ribbon. Team Always Loving Stacy took top Team in the end with Robert Spurrier taking top Individual. Team Pierson Powerhouse took third and had the largest team of walkers!

Members of our clinic team were present to express gratitude for the support received and to encourage all participants. Throughout the event, a palpable sense of hope contributed to an exceptional and memorable experience.

The event was filled with families and friends enjoying a roll or stroll through Temple Ambler’s beautiful gardens, fun activities and games for the kids, and raffles with amazing prizes.

We are so incredibly grateful to everyone who participated, donated, sponsored and volunteered. Your unwavering support makes a real difference in our fight against ALS. Together, we can make a difference and bring hope to those affected by ALS!!

To see more photos from the day, please check out our album on Flickr!

7th Annual Run for Hope 2025

What a beautiful morning for the Run for Hope 5K! After a week of rain, Sunday, May 18, 2025 dawned bright and beautiful!

Thank you to all of our amazing participants, teams, supporters, volunteers and donors for making the 7th Annual Run for Hope 5K such a success!
It was incredible to see how we all came together to raise funds and awareness for ALS! 

Thank you to the amazing runners, the teams, the volunteers, and the sponsors for making this such a successful event!

Check out the run site for the results and for more photos!

Check out our Flickr album for more photos from our photographers! Bob, Larissa, Paul and Sara!

21st Annual Research Update and Awards Luncheon

Thank you to everyone who joined us at the 21st Annual Research Update and Awards Luncheon held on Sunday, May 4, 2025 at the Inn at Villanova. This event is an opportunity for everyone to learn more about the current state of ALS research and for us to thank our wonderful supporters from throughout the year. We are grateful for the amazing level of support our community has shown our organization. Thank you!

Dr. Richard Bedlack, Associate Professor of Medicine/Neurology at Duke, Director of the Duke ALS Clinic, and Chief of Neurology at the Durham Veterans Affairs Medical Center, gave an excellent and thought provoking presentation on “Signals from The Outer Limits: What I've Learned from Slow ALS Progressors and Reversals and How I Think I Can Make This Happen More Often.”

Dr. Terry Heiman-Patterson provided an update on the work of the ALS Hope Foundation, showcasing the three pillars of Care, Education and Research that the ALS Hope Foundation embodies.

You can read the program book here.

We then took the opportunity to say Thank You to people or organizations that have supported the ALS Hope Foundation, especially over the past year.

Our first award, the Promise of Hope, goes to young people who are already making a difference in the ALS community despite their young age. Quinn Jennings raised money in memory of her grandfather and Sohana Damani has spent countless hours volunteering in the office, on social media, and at events.

The Spirit of Hope Award recognizes the work of our outstanding volunteers. Musician Lenny Blazick held fundraisers at The Royal in Glenside to support our Hope Bridges Program in memory of Gino Carosella. Paul Schiller and Larissa Ding give back with tremendous hours of volunteer work. We are grateful for all of them!

They all embody the saying, “You must be the change you wish to see in the world.” ~Mahatma Ghandi

Our Community of Hope awardees included our longtime lawyer, Frank Noyes, who retired this year, and a newcomer, Dr. Lijo Illipparambil, a new pulmonologist at Temple Hospital. Hopewell Pharmacy and PromptCare were also thanked for their support of our people living with ALS.

“Only a life lived for others is a life worthwhile.” ~Albert Einstein

Next came our Courageous Heart awardees. The Courageous Heart Award goes to those who take on a proactive role in the fight against ALS, supporting others with ALS and the ALS Hope Foundation, while courageously battling ALS themselves.

Our 2025 Courageous Hearts are Mikail Christakis, Scott Goldsberry, Greg Heydet, Wendy Hendrickson, Todd Kelly, Pat Kenney, Dr. Stacy Lewin Farber, Bob Spurrier and Marcos Trujillo.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'" ~Mary Anne Radmacher

Finally, we presented our Sunrise Award to Doug Hill and Mike O’Brien. The Sunrise Award goes to an individual or organization having demonstrated the highest level of commitment to supporting the ALS Hope Foundation through financial support and dedication to its mission. Doug and mike, and their families and friends, have demonstrated just that. We are not only thankful for them, but also inspired by them. Thank you to everyone who attended!

Inaugural Veterans CRLI 2025

The Inaugural Veterans Clinical Learning Research Institute (CRLI) was held May 2-3, 2025!

This event was a collaboration between the Veteran ALS Action Committee, the Northeast ALS Consortium (NEALS) and the ALS Hope Foundation. The CRLI is an intensive 2-day program dedicated to educating attendees on the clinical research process, therapy development, the treatment landscape and advocacy to empower them to be advocates for ALS clinical research. This program was conceived by Dr. Richard Bedlack and championed by Dr. Terry Heiman-Patterson who has brought several CRLIs to the Philadelphia region. This year, Veterans living with ALS, caregivers and surviving family members were invited to participate in this new program and graduate as Research Ambassadors and ALS advocates.

The conference was free to participants, and brought in leading clinicians and researchers in ALS, with a focus on research and care for veterans.  The goal of the program was to educate the participants and arm them with the tools to share this knowledge about clinical trials, current treatments, and methods for advocacy. Though some of the topics were scientifically (or statistically) complex, complete with unfamiliar acronyms, the presenters were effective in presenting analogies, answering questions and even supporting each other's presentations with further elaboration. It was amazing to have such close access. The group also carefully and critically read a published research paper and together uncovered serious flaws in the methodology and conclusions. It was a practice in distinguishing between false hype and authentic hope.  The final presentations were from Allison Bulat and a panel from the VAAC who shared not only their stories, but ways in which people could individually and collectively pursue advocacy goals.

At the conclusion of this CRLI, the participants earned their certificates as ALS research ambassadors and left with a deeper understanding of the research landscape in ALS and the unique opportunities and challenges for our Veterans. But more importantly, everyone left the conference with new friendships and a renewed commitment to advocate for the multiple issues that the ALS community and ALS veterans face.

See more photos on Flickr!

Gala of Hope 2025: The Gratitude Gala

Thank you to all of our supporters for making the 2025 Gala of Hope truly the Gratitude Gala and an evening of hope and impact! The ALS Hope Foundation’s Annual Gala of Hope presented by Green Star Exteriors was held on April 5th, 2025 and it was a night overflowing with hope, connection, and love. 

The evening kicked off with emcee Jeff Kurkjian, Co-host of the Andie Summers Show on 92.5 XTU, sharing his family’s personal story of ALS following his Uncle Matt’s diagnosis. His warmth and positive personality were a perfect match to the program!

This led into the introduction of the night’s Keynote Speaker, Doug Hill, a person living with ALS. Singer-songwriter Stephen Kellogg sent a special message to the family, including a moving song, Last Man Standing. Dr. Lyle Ostrow then spoke about the inspiration and the motivation that he gets from Doug.

Then Doug himself took to the podium to give a speech that people who were there will not soon forget. The words were his and his family’s story. Their story was typical and beautiful, until it was hit with this diagnosis, then it became filled with unanswerable questions. Beyond the words themselves, what stood out was the innovative way Doug chose to share his journey. Because his speech is affected by ALS, his message was delivered in part by avatar Doug using an AI generated voice.

Watch Doug Hill’s speech here.

To recognize the courage and inspiration of Doug Hill, we partnered with Lenny's Pizzeria & Trattoria in Bernardsville NJ for a special gift for the Hill family. As we were planning for our annual Gala of Hope, the ALSHF team visited Doug and his family in their hometown. During this visit, it quickly became apparent that Lenny's was a special place to Doug, Anna, and their three girls. In the following days, we also learned that Lenny's is actually a special place for the entire Bernardsville community. With the generous support of Ramy Ibrahim, the owner of Lenny's Pizzeria, we gifted the Hill family with a table dedicated just to them. A plaque will be placed on a table at Lennys which will read:"There’s always a table for friends and family at Lenny’s Pizzeria & Trattoria. This table is dedicated to the Hill family; Doug, Anna, Ellie, Siena, & Addie. From your  ALS Hope Foundation Family."

Doug played shortstop for his softball team (and was one of the top players!) and they presented him with the 2023 Team Champion sign, signed by the whole team. Their friends also presented the family with a "Poma" ski sign from Pico, a mountain in VT that he and his kids have skied frequently.  It's one of the toughest trails in the northeast and per Doug it's probably one of the prouder moments of his ski career.  

The speeches wrapped up with words from Dr. Terry Heiman-Patterson, President of the ALS Hope Foundation and Dr. Paul Katz, Chair of the Department of Neurology at Temple University, where the MDA/ALS Center of Hope holds its clinic. Governor Josh Shapiro sent video remarks and the ALS Hope Foundation, clinic and research teams expressed their gratitude to our supporters.

The remainder of the evening was filled with dancing, dessert, and catching up with old and new friends. We are deeply grateful to each and every one of you who attended the event, purchased raffle tickets, participated in the Silent Auction, or made a donation. Your support truly makes a difference, and we hope you left feeling the impact of your generosity.

A heartfelt thank you to the dedicated committee members and volunteers! Your tireless efforts made every step of the journey—and the event itself—a shining success.

And finally, thank you to the people and their families who are living with ALS, or who had a loved one with ALS, who came to the Gala of Hope. We love and admire you and appreciate your presence. You are why we do what we do. 

Reflections on My Experience at the 2024 International ALS/MND Symposium

In February 2021, I was diagnosed with ALS, and as I approach my four-year anniversary, I reflect on the challenges and rewards of being involved in ALS advocacy. Over the past three years, I’ve had the privilege of being selected as a Patient Fellow for the International Alliance ALS/AMD Symposium, where we share the knowledge gained with the broader community to raise awareness and provide accurate information.

This year, after attending virtually the last two years, I was excited to travel to Montreal in person. My husband, older son, and I made the journey from New Jersey, navigating icy roads and freezing temperatures, but the winter beauty of Montreal made it all worthwhile.

A heartfelt thank you to the ALS Hope Foundation and Dr. Terry Heiman-Patterson for introducing me to the Patient Fellow program. I am also deeply grateful to Dr. Sara Feldman, Chair of the Patient and Caregiver Advisory Council (PCAC), for nominating me to join the council. These opportunities have allowed me to contribute meaningfully to the global ALS community.

In addition to attending the symposium, I had the privilege of participating in a panel discussion titled Bridging the Gap: What PALS Want Researchers & Clinicians to Know (and Keep Doing Well!). It was an invaluable chance to share our voices and highlight the importance of patient involvement in research and care. As a member of the Patient and Caregiver Advisory Council (PCAC), I also joined my fellow council members in introducing ourselves, discussing the work of the PCAC, and emphasizing its role in advancing ALS care.

At the conference, I engaged with leading experts in ALS research, allied health, and patient care. One particularly fascinating area was the research on pre-symptomatic gene carriers, which is gaining increasing attention and showing promising results. A standout moment was the debut of the A Day in the Life Suite, a fully accessible apartment that allowed attendees to experience adaptive tools and technologies firsthand.

The conference was an unparalleled educational experience, offering excellent networking opportunities and plenty of time to socialize. I had the privilege of meeting people from all over the world—many of whom I’ve only connected with virtually in the past few years. The camaraderie was palpable, and while ALS brought us together, we left as true friends.

I returned home with renewed hope and optimism. Meeting and learning from others in the ALS community, both patients and researchers, has been one of the most rewarding aspects of my journey.

 Author Dr Stacy Lewin 

Co-Author Scribed and Edited by Daniel Farber 

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Notes from a Virtual Attendee

Todd Kelly also attended the meeting virtually as a Patient Fellow. He’s on the laptop in the photo to the right!

He also shared some takeaways from the meeting.

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.  I find the Alliance Meeting and Allied Professionals Forum much more PALS/CALS-friendly than the more technical International Symposium on ALS/MND. 

One element I found fascinating was the “A 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!

One drawback of being a virtual attendee of the actual forum is that only one of the three sessions is streaming live, so the choice is made for you. However, I was able to submit a question online about the ADORE clinical trial of oral edaravone and have it answered by the presenter live.  While the ADORE findings were disheartening, the sheer amount of research being done globally and highlighted in the symposium is truly encouraging.  The Poster Hall further supplements the scheduled speakers.  Many of the scientists presenting are very young/graduate students who offer generational continuity to this ongoing fight.

Todd Kelly

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. “

Watch our APF Meeting Instagram/Facebook reel here.

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

International Alliance of ALS/MND Associations Meeting 2024

The International Alliance of ALS/MND Associations held their Annual Meeting in Montreal, Quebec, Canada this December 2-3, 2024 hosted by the ALS Society of Canada and ALS Quebec. The Alliance is comprised of organizations from around the world and this year's meeting had attendees from 33 countries (see photo below!).

The Alliance is comprised of organizations from around the world and this year's meeting had attendees from 33 countries (see photo above!). The ALS Hope Foundation has been a member of the International Alliance of ALS/MND Associations since 2001 and this year Terry Heiman-Patterson, Jamey Piggott and Sara Feldman represented the Foundation in person at the International Alliance of ALS/MND Associations Annual Meeting.

Members of the ALS Hope Foundation PALS Advisory Council attended as members of the Patient Fellows Program, this year hosted by the Alliance. Stacy Lewin Farber (in person) and Todd Kelly (virtually) attended all three international meetings.

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 Michail Christakis and Doug Hill who represented the ALS Hope Foundation.

Watch the March of Faces 2024 video here. 

Program chair and PALS Gudjon Sigurdsson (Iceland), Cathy Cummings (Canada), Executive Director at the International Alliance, and Calaneet Balas (USA), Chair of the Alliance, welcomed everyone and kicked off the presentations from members around the globe. We will highlight a few of these presentations and give you an overview of the meeting below.

The first session was an interactive discussion on common challenges facing many organizations and possible solutions from peers. This support and collaboration idea was seen later when collaboration was the focus of a panel that included members from Argentina, Australia, Belgium, Kenya and the USA. Julia Simon from the Alliance educated us on the Alliance’s Knowledge Management Project, a framework to help set the educational foundation for PALS/CALS. The final product will be available to members to help them to ensure they are covering all areas and help strengthen each member organization.

We heard from several organizations with updates on their work over the past year including social issues facing PALS/CALS in Argentina, PALS led volunteer program in Italy, the cost of ALS/MND in Turkey and the newly formed association in Vietnam.

Technology was the focus of a presentation from Colombia on their Communication and Voice Preservation initiatives, Steve Saling provided a look into the ALS Residences in the US, Taiwan showed us their amazing use of technology in an almost futuristic look, and Jarnail Chudge, Innovation and Technology Advisory Council, discussed the use of AI and the development of the Patients Needs Matrix to ensure the needs and wants of PALS are being heard.  

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, Chaired by Sara Feldman (USA) with member Stacy Lewin Farber (PALS/USA) provided an update on the Alliance’s Fundamental Rights Survey.

Paula Trefiak (FALS/Canada), Leah Stavenhagen (PALS/France/USA), Steven Spangenberg (CALS/Australia), Leanne Sklavenitis (PALS/Australia), and Norman MacIsaac (PALS/Canada) took place on the in person panel.

Several organizations shared information on research including an overview of NEALS, FightMND’s research focused fundraising, ALSA’s survey on PALS perspectives on research, an update on International Collaboration from the Alliance, and a panel on Regional Research Updates led by Martina de Majo, the Alliance’s Science Director.

Genetics was the topic of several presentations including the panel pictured, Les Turner shared their online resource focused on Genetic Counseling and Testing, and there was Gene-Specific Education from End the Legacy.

The Path to Pre-symptomatic ALS/MND Trials Panel Discussion with speakers Michael Benatar (USA), Jean Swidler (USA), Stephanie Fradette (USA), and David Taylor (Canada) was the focus on the ALS/MND Connect Session this year. It was live streamed on fb and the link can be found here. 

We are pleased to note that Evy Reviers (Belgium) received the Humanitarian Award for her work with the ALS Liga Belgium, EUPALS, and the International Alliance. Well done!

Many other connections, collaborations and friendships were shared over the two days that we will know will continue throughout the year. #ALSMNDWithoutBorders #AWorldUnitedAgainstALSMND

Check out our Instagram/Facebook reel from the Alliance Meeting here!