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.

Research Update October 2022

/

There have been several announcements in the news recently in reference to treatments for ALS and we’d like to share them with you.

On September 30, 2022, the Food and Drug Administration approved Amylyx Pharmaceuticals Relyvrio (AMX0035) for the treatment of ALS. This drug is a combination of sodium phenylbutyrate and taurusodiol, two drugs that are synergistic and neuroprotective. The mechanism of action is directed at blocking cell death pathways that originate in the mitochondria and endoplasmic reticulum. The mitochondria are responsible for energy production and the endoplasmic reticulum is involved in protein production, modification and transport. When these cell components are damaged, as has been shown to happen in ALS, they cause oxidative stress and abnormal clumping of protein resulting in inflammation and cell death. In the Phase 2 trial (CENTAUR) along with the open label extension, AMX0035 slowed progression of disease and extended survival significantly. We will look forward to receiving information on what the procedure is to prescribe and when it will be available. We now have three drugs that can alter disease progression and affect survival in ALS—Riluzole, Radicava (IV and Oral), and Relyvrio. You may be asking which is the best and what should I take? The answer in short is all of them. ALS is a heterogeneous disease and there are multiple mechanisms that have been implicated to cause neuronal death. In any person one or another mechanism may be the predominant driver of disease but at this point, we do not have biomarkers or a way to tell in any one person what is driving the disease and thereby personalize the choice of medication or approach. These drugs each target a different mechanism –Riluzole likely targets glutamate excitotoxicity, Radicava oxidative stress, and Relyvrio cell death.

“Since we do not know in any individual which mechanism drives their disease—as long as there are no contraindications or adverse side effects, I would want to prescribe all three. I am so happy to be able to offer more hope to PALS at the MDA/ALS Center of Hope at Temple.”

Healey ALS Platform Trial

“Current therapeutic development in amyotrophic lateral sclerosis (ALS) relies on individual randomized clinical trials to test a specific investigational product in a single patient population. This approach has intrinsic limitations, including cost, time, and lack of flexibility. Adaptive platform trials represent a novel approach to investigate several interventions for a single disease in a continuous manner. Already in use in oncology, this approach is now being employed more often in neurology. Here, we describe a newly launched platform trial for ALS. The Healey ALS Platform Trial is testing multiple investigational products concurrently in people with ALS, with the goal of rapidly identifying novel treatments, biomarkers, and trial endpoints.”

Adaptive Platform Trials to Transform ALS Therapy Development.
Paganoni S, Berry JD, Quintana M, Macklin E, Saville BR, Detry MA, Chase M, Sherman A, Yu H, Drake K, Andrews J, Shefner J, Chibnik L, Vestrucci M, Cudkowicz ME; HEALEY ALS Platform Trial Study Group. Ann Neurol. 2021 Dec 21

It is because of this design that it is felt that we are getting answers to drugs effectiveness sooner. The results to date:

March 1, 2022 Zilucoplan arm stopped early for futility. The independent Data and Safety Monitoring Board (DSMB) recommended stopping the zilucoplan regimen in the HEALEY ALS Platform Trial after a pre-scheduled interim analysis demonstrated futility.

 Read the press release here.

September 29, 2022 Healey & AMG Center announces results from the HEALEY ALS Platform Trial with verdiperstat. Verdiperstat "did not statistically differentiate from placebo on the pre-specified primary efficacy outcome, disease progression measured by the ALS Functional Rating Scale-Revised and survival, nor the key secondary efficacy measures during the 24-week study period.”

 See the Webinar recording here.

October 3, 2022 Healey & AMG Center announces top line results in ALS platform trial with CMN-Au8. The primary endpoint of adjusted ALSFRS-R slope and key secondary endpoints of CAFS and SVC were not met at 24 weeks.

 Read the press release here.

 

“Thank you!”

To every person who participated in these trials, we say Thank You! The clinical Trial Team at the MDA/ALS Center of Hope at Temple sees the sacrifices you make, appreciate the time we spend with you, and consider you all heroes.

The ALS Chocolate Meltdown 2022

/

What a blast we had at the Chocolate Meltdown at the Adventure Aquarium in Camden, NJ on Friday September 23, 2022!!

The funds raised will provide support to the ALS Hope Foundation and Hope Loves Company!

This event would not be possible without Larry and Jill Kaplan, our volunteers, sponsors and YOU!

 Check out these photos to see what this fabulous event is all about: Lafayette Hills studio provided the photography.

See Dr. Stacy Lewin’s remarks here!

15th Annual Hope Walks for ALS raises over $90,000!

/

Sunday, September 18, 2022 was a brilliant, sunny day for Hope Walks for ALS! Check out more photos here!

Volunteers started showing up at 7:30AM to the Temple University Ambler Campus with enthusiasm and muscle, (fueled by coffee and donuts). The volunteers were awesome all day long and we could not have done it without them!

Walkers and rollers, families and friends, teams and pets arrived soon after! It was awesome to see the joy as people came together in-person again to support their loved ones. We thank each and every one of you!

Our Honorary Walk Chairs, Susan Lowry and Mark Stem, and their amazing families led the way!

We had a fun family festival area complete with a bouncy slide from Max and Ollies and face painter, Charmed Face Painting! DJ John Alexander from Eclipse Entertainment kept us all entertained and dancing!

Food was provided by Lee’s Hoagies, Pudges, Wise, Darryl’s Pastries, Rita’s Italian Ice and Ambler Pizza with support from Soleo!

We couldn’t have done it without our wonderful sponsors!

Watch for a video from 400 Foot Views coming soon!

And, of course the raffles were ridiculous! In a good way! Thank you to our raffle donors!

  • Aim High Yoga

  • Ambler Beverage

  • Ambler Florist

  • Ambler Sports Store

  • Ambler Theatre

  • Brick and Barrel

  • Don’t Blink Boutique

  • Philadelphia Eagles

  • El Limon

  • Fireside Tavern

  • Philadelphia Flyers

  • Guiseppes

  • Hallmark

  • Home by Kristin

  • JuicePod

  • La Frida

  • LearningExpress

  • LibertyCoke

  • Longwood Gardens

  • Margaret Treasures

  • Pudges

  • Philadelphia Union

We were thrilled to give back to the Temple University Ambler Campus with a donation for a new tree to help with the damage left behind from the tornados last year!

Thank you from the Center of Hope Team and Walk Committee!!

2022 4th Annual Run for Hope 5K

/

Thank you to everyone that attended the 4 th Annual Run for Hope 5K. It was a beautiful morning at Norristown Farm Park where over 160 participants ran or walked to help find more treatments and a cure for ALS. We made some amazing new memories and appreciate all the support we have from our participants! It was incredible to see how we all came together to raise awareness for ALS! With everyone’s support we were able to raise over $40,000 with a matching gift of $10,000 that will directly help the Dr. Robert Sinnott Research Lab.

This event would not have been possible without our founder Gary Kurtis who started this run 4 years ago to honor his father who lost his battle with ALS in 2002. We also what to thank the committee that have been planning this event for the past several months and all the volunteers that came out to help the event run smoothly.

This year we had 15 teams join us and each one brought so much strength and support for our mission. Thank you to our teams- AARC, Carr Pe Diem, Center of Hope, Erasing ALS one step at a time, Grandpa’s Team, HICKEY, In memory of Alan G Croasdale, Individual Runners, OTF Paoli, Pierson Powerhouse, Stem Construction, Team Adickes, TEAM MEG, Team Tkachuk, Together We Fight

Also, a big thank you to all of our sponsors for their support they help us make this day happen! Brainstorm Cell Therapeutics, Mitsubishi Tanabe Pharma America, Sales Tips 101, MDA/ALS Center of Hope, Bryn Mawr Racing Company, Brotherston Home Care, DiRosato Plumbing and Heating Company, Soleo Health, DJB Specialties, Home Transformations, Organic Remedies, McCaffrey’s Food Markets, Niagara, Wawa, and Star Printing.

Please check out all the photos on Flickr! Thank you to Bob Patterson, Larissa Ding and Ted Goldman for all of these amazing photos.



4th Annual Gala of Hope

/

Thank you to everyone who supported our 4th Annual Gala of Hope, an evening of inspiration, motivation and hope. We are deeply grateful for everyone's generosity and were overwhelmed by the outpouring of support and love. We cannot adequately express our sincere appreciation to all of you. 

Our heartfelt thanks go to Officer Scott Davis, the keynote speaker. He shared his journey, his dreams and his focus. He reminded us that ALS does not play fair, but neither do people living with ALS. His strength and determination and emotional story had us all up on the podium with him, supporting him. In his words, he is not dying from ALS, he is living with it!

We were moved by the friends and family of Dr. Robert Sinnott who took on the challenge of doing something great in his honor after hearing him speak last year. Exceeding all expectations, the Dr. Robert Sinnott Research Lab Fund has raised over $150,000, ensuring the establishment of the lab and allowing the ALS Hope Foundation to push forward research towards a cure. Unbelievable! 
 
Additional thanks to emcee Stephanie Stahl from CBS3, who was an excellent host. Thank you to all of our sponsors, many of whom have been on-going supporters of the ALS Hope Foundation. Many thanks to all who donated the raffle and auction items, as your generosity truly added to the evening's festivities. And, of course, a huge thank you to the staff at Vie who admirably managed a room full of 500 guests with ease and professionalism.
 
And most importantly, a sincere thank you to the people and their families who are living with or who have lived with ALS and came out to the gala. We know it is an immensely emotional and difficult night and your presence demonstrates a willingness to come out to advocate for and support the ALS Hope Foundation. You remain our inspiration as we continue to work hard and push forward our mission of care, education and research to make a difference.  

We hope to see you next year!

See our Gallery for more photos!

30th International Symposium on ALS/MND

/

The 30th International Symposium on ALS/MND was held in Perth, Australia December 2019. This Symposium is put on annually by the MND Association of England, Wales, and Northern Ireland and is a full week of meetings, presentations, and posters. This event attracted over 800 attendees, including scientists, clinicians, organization leaders, and people living with ALS and their caregivers from around the world. Justin Kwan, MD, and Sara Feldman, DPT, ATP, spent the week attending the many scientific and clinical sessions and meetings.

Calaneet Balas (ALS Association, USA), Chairman of the International Alliance of ALS/MND Associations, opened the week of meetings on December 1, 2019, with the 27th Annual Alliance Meeting. The Alliance brings together ALS/MND organizations from around the globe, and ALS Hope Foundation has been a member of this international group since 2001. Dr. Sara Feldman completed her second term on the Board of Directors for the Alliance and stepped down this year. Andrea Blackman from the Les Turner Foundation in Chicago was elected to the Board to fill the opening, and we wish her all of the best. Dr. Feldman presented on the work of the PALS and CALS Advisory Council The program from the meeting can be found here.

The ALS/MND Connect (previously Ask the Experts) event is held on the second day of the meetings. This year’s panel included Professor Matthew Kiernan (Australia), Professor Ammar Al Chalabi (UK), Professor Merit Cudkowicz (USA), and was moderated by Professor Merrilee Needham (Australia). The event was live-streamed on social media, and the full video and PowerPoint slides are available via this link. 

The Patient Fellows Program began three years ago as a way to fund people living with ALS/MND to attend the Symposium and add their experiences to the discussion. View a few of their insights here.

The Allied Professionals Forum was held on December 3, 2019, this is a day-long session developed for Allied Health Professionals, and the ALS Hope Foundation has been a committed supporter for many years. Sara Feldman (ALSHF) is a co-chair along with Rachel Boothman (MNDA). The Program Agenda can be found here, and the presentations are on the Alliance website.

The 30th International Symposium on ALS/MND then took place on December 4-6, 2019. Sally Light (MNDA) opened the Symposium, and David Ali from MND Australia, this year’s hosts, welcomed everyone in attendance. It was three full days of presentations and posters. Please see the full program here. Sara Feldman presented two posters, “The Addition of Rotational and Adjustable Flexion Components to Cervical Support” and “Assessing Assistive Technology Use and Needs by Individuals with ALS/MND.” Dr. Feldman also co-chaired the session on Palliative Care with Dr. David Oliver (UK).

The International Symposium on ALS/MND is the largest medical and scientific conference specific to ALS/MND in the world. It brings together everyone, leading researchers, clinicians, PALS/CALS, and associations, who dream and believe that one day there will be a world without ALS/MND. We all leave invigorated with a renewed sense of purpose, inspired with new ideas, and driven with that ever-present urgency, for we know that for those living with ALS/MND, time is all too precious and short.