2025 International Symposium on ALS/MND

The International Symposium on ALS/MND took place over three days, December 5-7, 2025, in San Diego. This year's symposium started with a Welcome from Dr. Ammar Al-Chalabi (UK) and Brian Dickie (UK) of the Motor Neuron Disease Association (MNDA) and from Kuldip Dave (USA) of the ALS Association.

Terry Heiman-Patterson, Lyle Ostrow, Cassandra Haddad, Jamey Piggott and Sara Feldman attended the International Symposium in person.

Sara Feldman was one of the judges for the Clinical Poster Prize. 

The posters sessions were well represented by our collaborators! Cassandra Haddad from End the Legacy; Mandi Bailey and Jill Brattain from the Veterans ALS Action Committee; Kelly Duffy presented Natural History Data, Terry Heiman-Patterson was an author on the poster.

2025 Allied Professionals Forum

The Allied Health Professionals Forum (APF) took place December 1-2, 2025 in Toronto, Ontario, Canada. The ALS Hope Foundation has supported this program for over 20 years, starting with its second meeting which was held in Philadelphia in 2004.

We were pleased to have several members of the MDA/ALS Center of Hope and ALS Hope Foundation team attend this year's APF. Sara Feldman, Donna Harris, Jamey Piggott, Donna Sickles, Mary Holt-Paolone and Jennifer Doto attended along with ALS Warrior Wendy Hendrickson, an ALS Hope Foundation PALS Advisory Council (PAC) member and speaker at this year’s meeting. Stacy Lewin Farber, another PAC member, attended virtually.

Physical Therapist Sara Feldman (USA) co-chairs the event along with Rachael Marsden (UK), which brings together allied health professionals from around the globe. Sara is stepping down this year after 11 years of co-chairing the event. We know she will be missed!

the image, peaceful warrior, was done by sarah ezekiel, a person living with MND in the UK and eyegaze artist.

 Jennifer Doto and Sara Feldman presented on the Hope Bridges Assistive Technology Program supported by the ALS Hope Foundation.  Jennifer Doto and Sara Feldman presented on the "Hope Bridges Assistive Technology Program" supported by the ALS Hope Foundation. This program allows Jen to go out to an individuals home to provide assistance with assistive technology as a follow up to the clinic visit. Here Stacy Lewin Farber, a member of the PALS Advisory Council, demonstrates the use of assistive technology in her home.

ALS Warrior Wendy Hendrickson and Mary Holt-Paolone presented Wendy’s Wish 911 to the international audience. The mission of Wendy’s Wish 911 is to raise awareness and to educate and facilitate conversations with first responders and hospital emergency staff about the unique challenges faced by individuals living with ALS and other neurological conditions during emergencies.

“As a person living with ALS, attending the International Alliance was life changing for me. I was blessed to be able to present my Wendy's Wish 911 to the international community. It was very well received, and many organizations globally have reached out to collaborate. I am truly humbled and a bit overwhelmed by the outpouring of support. It was amazing to be able to see first hand all the people from around the world who have dedicated their lives to the ALS cause. As a ALS Warrior you tend to only see your clinic team and then to see this huge collective of dedicated people, truly gave me HOPE!” ~Wendy Hendrickson

“I would say…how important it is for us to continually learn how other centers and HCPs operate and manage ALS to make sure we are providing the best care options possible within our institution, as well as continually asking ourselves, but more importantly our PALS/CALS for feedback/insights toward improvement.” Mary Holt-Paolone Wendy’s Wish 911 certainly is an important example of that!

The ALS Hope Foundation was honored to support the Day in the Life Experience at the Allied Professionals Forum. During the APF, the Alliance transformed one of the conference rooms into a space to demonstrate assistive technology available for people living with ALS/MND as well as have specialists available to answer questions. Jennifer Doto was one of these specialists! She worked with Nova McGiffert, an OT from Temple University, on the “Rest, Relaxation, and Intimacy” section.

You can view a virtual walk through with Jarnail Chudge, Innovation and Technology lead at the International Alliance.

Donna Harris, SLP, commented on her experience in the Day in the Life: “I voice banked my own voice with the help of Bridging Voices using Eleven Labs and it was so interesting.  The voice really sounds like me!”

2025 International Alliance of ALS/MND Associations Meeting

The International Alliance of ALS/MND Associations held their Annual Meeting in Toronto, Ontario, Canada this November 29-30, 2025 hosted by the ALS Society of Canada and the ALS Association. The Alliance is comprised of organizations from around the world and this year's meeting had attendees from over 30 countries.

The ALS Hope Foundation has been a member of the International Alliance of ALS/MND Associations since 2001 and this year Jamey Piggott, John Furey and Sara Feldman represented the Foundation in person at the International Alliance of ALS/MND Associations Annual Meeting. Terry Heiman-Patterson and Stacy Lewin Farber, a member of the ALS Hope Foundation PALS Advisory Council and an Alliance Patient Fellow, attended virtually.

Jamey Piggott and John Furey presented on the True North Men's Group. In John's words: "Our session generated genuine global enthusiasm. Colleagues from as far as Australia, as close to home as the United States, and many represented countries in between, had sensed a gap in the support available to men living with ALS, but the development of an infrastructure and place where these gentlemen can freely express their concerns and issues among peers with shared experience was scarce."

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 Bob Spurrier and John Sweeney who represented the ALS Hope Foundation. Mikey Stone and Frankie Torres shared their beautiful song “Losing to the Letters,” for this year’s March of Faces. Mikey, who is living with ALS/MND, and Frankie, who lost her father to the disease, co-wrote and performed the song, and Mikey produced and engineered it. Watch the video here. 

“While support groups are not new, intentionally designing them to address gender-specific emotional needs is still far too rare. The longstanding expectation for men to remain “strong, silent providers” has likely contributed to this apparent yet unmet need going unaddressed. It was energizing to see that our work resonated across cultures and to make connections with teams eager to adopt the True North model for their own communities. As a first-time attendee, I was also struck by the diverse, global perspectives on ALS care, resources, and research. It was a powerful reminder of the collective commitment driving this field forward. I left the meeting inspired and hopeful for meaningful international collaboration ahead.”

Jean Swidler, of End the Legacy, presented "Being at Risk of Genetic ALS/MND: A Shared Community of Interest-Growth and Future Directions." 

Sara Feldman was thanked for her years of service to the International community. She is stepping down this year after six years as the Chair of the PALS and CALS Advisory Council to the International Alliance and eleven years as the Allied Health Professionals Co-chair. Pictured here with Calaneet Balas (USA) and Tammy Moore (Canada). 

Connections, collaborations and friendships were renewed and refreshed. Information was shared over the two days that we will know will influence our work in the future. #ALSMNDWithoutBorders #AWorldUnitedAgainstALSMND

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.