17th Annual Hope Walks for ALS Family Fun day

The 17th Annual Hope Walks for ALS Family Fun Day was held on September 29, 2024 at Temple’s Ambler Campus and what a day it was!!

With over 800 registrants, we raised an astounding $160,250 to support ALS research and patient care! This year, we had the honor of celebrating Mike O'Brien as our walk chair. Mike is a proud father of four girls as well as a veteran living with ALS.

Mike and his wife Diane, the inspiration for OB'S ARMY, shared his powerful story, reminding us all of the importance of our mission and the impact of the support we provide.

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. Our clinic staff and doctors were on site to thank everyone for their support. The sense of hope was evident throughout the day creating a truly unforgettable experience.

We are so incredibly grateful to everyone who participated, donated, 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.

Missed this year’s walk? Don’t worry! Visit here to see photos from the day!

20th Annual Research Update and Awards Luncheon

The Research Update and Awards Luncheon was held on Sunday, May 5, 2024 11:00AM-2:30PM at The Inn at Villanova

Thank you to everyone who joined us for an excellent day of education, information, and awards!

Dr. Jinsy Andrews, Co-Chair of the Northeast ALS Consortium (NEALS), Associate Professor of Neurology in the Division of Neuromuscular Medicine and the Director of Neuromuscular Clinical Trials at Columbia University in New York City, gave an excellent presentation describing the current state of ALS Clinical Trials with an intriguing look to the future.

Dr. Terry Heiman-Patterson provided an update on the work of the ALS Hope Foundation and the Dr. Robert Sinnott Research Lab. She then took a moment to thank Dr. Guillermo Alexander, upon his retirement, for for his over 25 years of research on ALS.

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.

International Symposium on ALS/MND

The International Symposium on ALS/MND was held in-person for the first time in 3 years, December 6-8, 2023. The symposium started with a welcome from Tanya Curry (UK) and Dr. Ammar Al-Chalabi (UK) of the Motor Neuron Disease Association (MNDA). 

Dr. Terry Heiman-Patterson attended the meeting virtually and summarized some of the new strategies that are being developed for new and more effective treatments of ALS/MND.

First, I will summarize some of the new strategies that are being developed for new and more effective treatments. Oxidative stress is an important target for treatment of ALS. Certainly, we already have one therapeutic agent, Radicava, that is aimed at scavenging the free radicals produced by oxidative stress that damage the cells. Investigators presented a different strategy—targeting the mechanisms that regulate the production of free radicals through the protective enzyme PDI, which acts to reduce the clumping (misfolding) of proteins and inhibit oxidative stress. Investigators have created novel molecules containing the active region of PDI and showed that these molecules were protective in cell and animal models.

Another strategy by Athira Pharma is examining the potential of small molecules modulating the neurotrophic hepatocyte growth factor system, which is neuroprotective and anti-inflammatory. One of these molecules, ATH1105, showed both independent and synergistic improvement in disease in a mouse model of ALS.

Another target discussed was the clumping of the protein TDP43, an important regulator of RNA processing to produce protein. TDP43 is found in the nucleus of cells in normal circumstances, but in ALS, it moves from the nucleus to the cell cytoplasm, where it clumps (aggregates), a finding in virtually all ALS neurons. It is hypothesized that the clumps may drive inflammation and degeneration. While there are trials designed to increase the clearance of these clumps, other strategies to reduce the amount of clumping are being developed.

One group of investigators showed that a small piece of a protein that regulates TDP43 improves function and survival in a fly model and mouse model of ALS. Other strategies are directed at ways to clear the clumped TDP43 through increases in a process called autophagy. These molecules showed improved survival in culture models. Other investigations focused on the loss of function that occurs when TDP43 moves out of the nucleus. Nuclear TDP43 is responsible for piecing together RNA properly to code for proteins. However, when it moves out of the nucleus, RNAs are not properly put together (this is called mis-splicing). The resultant proteins are not properly made and do not function as they should. Two important proteins that are affected by mis-splicing in ALS are UNC13 and STMN2. There are now genetic techniques being used to correct the RNA mis-splicing of STMN2 in trials, and we heard about a similar strategy to correct UNC13 RNA mis-splicing in cultured neurons. Finally, we heard about genetic strategies to alter the aggregates of small proteins that occur with the C9ORF72 expanded repeat, the most common genetic cause of ALS.

 Of course, everyone is interested in the results of the clinical trials that were reported at the meetings. We heard some additional results from Valor, the trial of Tofersen (Qalsody) in SOD1 ALS. Qalsody is an antisense oligonucleotide that blocks the production of SOD1 and was recently approved by the FDA. Participants were allowed to continue the drug in an open label phase that has continued for up to 3 years. This has enabled additional observation of the efficacy. This data demonstrated a significant reduction in the neurofilament levels which reflects reduced neuronal degeneration as well as continued slowing of decline that continued over the period of analysis. Additionally, in a subset of participants there was an unexpected improvement in strength. Overall, there was improved survival, and for the rapid progressors, survival was extended by 1.6 years.  

Promising results were reported on pridopidine, a small molecule that stimulates the Sigma 1 receptor and provides a neuroprotective effect. The phase 2 HEALEY ALS Platform Trial of pridopidine demonstrated it was safe and well tolerated. There were significant speech improvements compared to placebo, especially in speaking rate and articulation. Additionally, in the subgroup of participants with definite or probable ALS, early disease or fast progression, there were beneficial effects on measures of progression. This will help to design an upcoming Phase 3 trial.

Co-ALS, a phase 2 trial of colchicine (an already-approved drug that has an anti-inflammatory effect reduces clumping of proteins (TDP43) in cultures) demonstrated a decrease in the decline of function measured by the ALSFRS-R over 30 weeks, supporting further study of colchicine as a therapeutic agent. MIROCALS demonstrated a reduced risk of death when IL2, an anti-inflammatory molecule that drives T-regs (protective white blood cells), was administered with riluzole in a group of newly diagnosed ALS participants. Finally, we heard about apilimod dimesylate (AIT-101), which is directed at improving the clearance of clumped proteins including TDP43 through inhibition of an enzyme PIKfyve, which in turn causes the increase in a protein TFEB that increases the degradation of clumped proteins. This small trial in people with the C9ORF72 genetic variant of ALS demonstrated that AIT-101 was able to penetrate the brain and hit its target, with an increase in the activity of TFEB. This success will enable this molecule to move forward into Phase 2 in both sporadic and genetically-caused ALS.

While everyone has their focus on drugs that modify disease, we are learning more about the important role nutrition plays. Recently, I mentioned a paper that demonstrated omega 3 fatty acids could slow progression of ALS. At the meetings, a study of diet demonstrated that people living with ALS who consumed a diet that had a high glycemic index had slower disease progression and longer survival. The glycemic index reflects how much the sugar levels in your blood rise after eating a particular carbohydrate and is measured relative to pure glucose. Examples of high glycemic foods include white bread, rice, potatoes, and sugary soft drinks. This study underscores the need to maximize the interventions that are available now, including nutrition and respiratory support.

Sara Feldman, PT, DPT, ATP, attended the meeting in-person and co-chaired the Clinical Session on Improving Clinical Practice along with Dr. Mieko Ogino (Japan). 

She shared her thoughts on the Clinical Sessions: The first session focused on respiratory management in ALS/MND. Interesting presentations included Andrew Geronimo (USA) presented on the use of home monitoring respiratory status and how the use of home spirometry can give an early indication of need for Non-Invasive Ventilation. M Grassano (Italy) presented his work showing that Non-invasive mechanical ventilation slows the disease progression in ALS/MND. The NIV provides the support the motor neurons need.

Dr. Heiman-Patterson’s work was cited in the presentation.

The next session was on Technology and Telemedicine and there were several discussions on the use of digital technologies for home-based assessments, both in the clinical and research areas. An interesting talk on the use of a self-explanatory ALS Functional Rating Scale (ALSFRS-R-SE) from A Maier (Germany) has many people debating the ALSFRS-R scale’s utility.

The final session of the day was on Caregivers and Families. The presentations on Informal Caregiving from M Galvin (Ireland), exploring parents’ and children’s perceptions of the communication around ALS from M Sommers-Spijkerman (Netherlands) and factors predicting anticipatory grief, A Trucco (UK) highlighted the difficulties families face around the globe.There was also a common thread that it is necessary to keep communication open and ongoing. None of these decisions are a one time discussion!

The next morning started with Nutrition Assessment and Management. Dr. Heiman-Patterson discussed the higher glycemic diet already from I Lee (USA). K Tran (USA) presented on the decision making process surrounding feeding tubes. There was also an interesting presentation from J Chang (Australia) indicating alterations in the brain’s response to food stimuli may impact appetite.

Improving Clinical Practice was next, which I had the honor of chairing with Dr. Ogino. H McDonough (Ireland) and A Puchades (Spain) presented their work on mapping the natural history of ALS/MND in Europe. J Roggenbuck (USA) presented on Evidence-based consensus guidelines for ALS genetic testing and counseling, work which is a hot topic right now and incredibly important.

The final morning began with Clinical Management and a new look at standards of care given the state of multiple treatments and options by C Ingre (Sweden), which included Assistive Technology. M Cavanaugh (USA) brought up the incredibly important topic of how to break the news, helping to educate physicians and allied health professionals on how to have difficult discussions with patients. A Genge (Canada) and Cathy Cummings (Canda) participated in this presentation.

The Symposium ended with awards, a scientific update, and a look forward to next year’s meeting in Montreal. Overall, 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 to whatever aspect of work surrounding ALS/MND we are in.

International Alliance of ALS/MND Associations Meeting and Allied Professionals Forum

The International Alliance of ALS/MND Associations held their Annual Meeting December 2-3, 2023 in Basel, Switzerland with representatives from 26 different countries in attendance. The ALS Hope Foundation has been an active member of the Alliance since 2001 and this year 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. Special thank you to Wendy Hendrickson and Greg Heydet who represented the ALS Hope Foundation.

See the video here.

Program chair and PLWALS Gudjon Sigurdsson (Iceland) and Cathy Cummings (Canada), Executive Director at the International Alliance, welcomed everyone and kicked off the presentations from members around the globe, a few we will highlight below.

We heard from several organizations with updates on their work over the past year including FightMND, Asociación ELA Argentina, MNDA, the ALS Association, Spain and MNDA Scotland, all of whom shared insights and experiences that may be applicable to other organizations. Several shared specific challenges and how they are meeting them, including Colombia’s partnership with ALSA for communication devices and Dr. Melinda Kavanaugh (USA) presented on the Global Neuro Y Care program.

Several support programs were presented including End the Legacy’s peer support for the Genetic ALS/FTD community, Denmark’s support interventions targeting people with ALS and their caregivers, and Israel’s support groups. Guides to help people navigate ALS were presented including the Dutch ALS Guide, My ALS Journey from ALSA, and the ALS/MND Clinic Locator. We heard about the life of a person living with ALS in Japan and went through her day with her; we heard from Alper Kaya (PALS/Turkey) about the earthquake in Turkey and how it affected PALS; we heard about differences in research and treatment access in different areas of the globe; and 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, provided an update on what they have accomplished over the past year, with a focus on the Alliance’s Fundamental Rights Survey. PCAC Chair, Sara Feldman (USA), Gudjon Sigurdsson (PALS/Iceland), Ajay Gupta, (CALS/India), Bruce Virgo (PALS/Scotland) and Paula Trefiak (PALS/Canada) were in-person; Angelique van de Lit (PALS/Netherlands), Albert Koo (PALS/Malaysia), Norman MacIsaac (PALS/Canada), Felipe Ocampo (PALS/Colombia) and Orlando Ruiz (PALS/Colombia) were virtual.

The Humanitarian Award was announced during the meeting, and we were pleased to learn that Dr. Lucie Bruijn received the award.

A highlight of the meeting was the preview of the animated film, Luki and the Lights, which tells the story of a robot with ALS.

Following the conclusion of the Alliance Meeting, the ALS/MND Connect took place with amazing speakers Dr. David Taylor (Canada), Dr. Nick Cole (UK), Dr. Kuldip Dave (USA), Dr. Ammar Al-Chalabi (UK), Dr. Gethin Thomas (Australia), virtually Dr. Andriano Chio (Italy) Dr. Jeanine Heckmann (South Africa) and Dr. Nadia Sethi (CALS/USA) from the Scientific Advisory Council, or SAC and moderated by Allison Bulat (CALS/USA).

There were presentations followed by a discussion/question period. The video can be viewed here.

It was both informative and inspiring to learn from other organizations around the globe.

#AWorldUnitedAgainstALSMND #ALSMNDWithoutBorders

The Allied Professionals Forum, or APF, co-chaired by Sara Feldman (USA) and Rachael Marsden (UK), then took place over the following two days. The APF 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 PALS and CALS Advisory Council (PCAC) members, Felipe Ocampo (Colombia), Paula Trefiak (Canada), Gudjon Sigordsson (Iceland), Alper Kaya (Turkey), Bruce Virgo (Scotland), Angelique van der Lit (Netherlands), and Orlando Ruiz (Colombia) who thanked all of the allied professionals in attendance for the work they do and the care and compassion they do it with. It was a heartfelt reminder to everyone in the room why we do the work we do.

Sarah Solomon (Australia) and Helen Carey (USA), both Occupational Therapists, started the APF with a provocative discussion on Embracing Risk: Enabling doing for people living with ALS/MND, which set the stage for the next two days. There was a real sense of how can we, as health professionals, stretch beyond our usual boundaries and enhance the lives of people with ALS and their caregivers.

The Luncheon this year was sponsored by the ALS Hope Foundation, and Jamey Piggott, Executive Director of the ALS Hope Foundation, thanked everyone for their work and participation. He reflected that the audience lived by Dr. Dale Turner's words, "Extend Yourself."

Donna Harris, the Speech Language Pathologist at the MDA/ALS Center of Hope, joined us for the APF. She was pleased to note there was a presentation on oral care.

Dr. Deirdre Murray, a Research Fellow and Clinical Specialist Physiotherapist in Neurology at Beaumont Hospital, Dublin, was the recipient of this year's Allied Health Professional Award for 2023. This award was initiated in 2018 and recognizes recognize an individual committed to providing exceptional care to people with ALS/MND and the sharing of this knowledge.

We also managed to get all of the previous awardees together for the first time!

The APF was an amazing meeting over two days with excellent presentations on all aspects of care as well as a look to the future of technology and the addition of experiential presentations. Here are some of the highlights of the two days:

There was an excellent presentation from G Gisladottir, G Serrero, and F Mancuso (Iceland) on Eating with Dignity. They take food and puree it to the appropriate consistency for the person, then shape it in molds so it looks like actual food. And it tasted delicious!

There were exciting updates to assistive technology including J Chudge and W Gregory’s presentation on using AI and gaming for quality of life; updates to message banking and where the state of the art is by J Costello (USA) and also N Jackson (Australia); the use of eye-gaze to drive a power wheelchair by L Hills, M Hevicon, and S Fielden (UK); Experiential Apps were demonstrated by R Cave (UK) which included amazing software for making digital art and voice recognition for people with significant difficulty speaking/dysarthria. We will be watching for those to come out!

Several rehab focused presentations were done including an excellent one on ALS and Exercise by C Radcliffe (Australia) and one on healthy teeth and oral care that Donna Harris was pleased to see by M van der Linden (Amsterdam). S Brumby (Australia) gave both a heartfelt and informative presentation on choosing NIV, what the person needs to know ahead of time. One of the PALS in the room said it was the first time he had heard it put that way, and thanked her.

We also heard from D Meissner (USA), our friend at Your ALS Guide on their most recent work. Jamey also commented on the Expanding Access to Genetics Education, Counseling, and Testing: Innovations in ALS Genetics Care by P Wicks (UK), L Dratch and L Webb (USA). M Kavanaugh (USA) told us more about how children are experiencing caregiving. Really, there were so many excellent presentations, it is hard to highlight just a few!

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.

NEALS Meeting 2023

The 2023 Annual Northeast Amyotrophic Lateral Sclerosis Consortium® (NEALS) Meeting was held in Clearwater, FLA this October. We had a wonderful time where we heard about some of the exciting work going on in ALS and met up with colleagues from across the United States all of whom are focused on making progress in understanding and treating ALS. It was great to bring the team along including our student researcher Zach Farber and our neurology resident researcher Hannah Henderson.

Before the official start to the meeting, there are educational events that that take place, including the Clinical Learning Research Institute (CRLI). Dr. Heiman-Patterson is a member of the CRLI faculty and plans to hold a regional CRLI in the Philadelphia area this Spring.

The Outcome Training for clinical trials, including refresher sessions on the Healey Platform Trial, was also part of the pre-conference education and Kathleen Hatala, Sara Feldman and John Furey attended these sessions.

The topics throughout the meeting included General Sessions, Updates, Science Symposium: Gene Therapies of the Future and the Hot Topic: Advancements of Neurofilament as a Biomarker. A lot of great discussions! 

There was a fantastic session from the Global Research Ambassadors, "Real People, Real Impact," which was presented by people with ALS, pre-symptomatic carriers, and surviving caregivers. It was truly impactful!
Jean Swidler, End the Legacy, highlighted Dr. Heiman-Patterson as a difference-maker in her advocacy. 

We were privileged to present some of the work from the ALS Center of Hope highlighted in the posters below.

ALS Natural History Database Supports the

Common Plateaus in ALS

Using the large Natural History Database, we confirmed the finding that there are plateaus in ALS. Ten centers contributed to this database including the ALS Center of Hope and many of our PLWALS are included in the data. In 1021 PLWALS in whom we captured 3 or more clinic visits, 21.5% of PWALS plateau for 6 months while 10.8% plateau for a year and 6.5% for 18 months.

Healthcare Disparities in ALS

Using data from the Natural History Database, we examined healthcare disparities in ALS.  In this initial study there was no difference between Black PLWALS and White PLWALS in regards to the time to diagnosis or survival. However, the ALSFRS and FVC at diagnosis was significantly lower in Black PLWALS relative to White PLWALS and the average age of onset lower. Additionally fewer Black PLWALS received feeding tubes at the clinically recommended time and fewer were on Radicava.

Characterizing Patient Preferences, Satisfaction & Quality of Care Across Healthcare Models in ALS

This study demonstrated that people living with ALS and their caregivers prefer multidisciplinary care and seeing all of the professionals with each visit. Additionally we found that this care setting adheres most to the quality of care measures for ALS outlined by the Academy of Neurology.

Oxidative Enzyme Analysis on ALS Subtypes: Implications for Edaravone treatment, an interim analysis

Dr. Jeffrey Rosenfeld from Loma Linda University Health presented on our collaborative work from the Dr. Robert Sinnott Research Lab.

One thing is certain we always come back with new ideas and renewed enthusiasm.

2023 5th Annual Run for Hope 5K

What a beautiful morning for the Run for Hope 5K!

Thank you to the impressive runners!

Thank you to our awesome sponsors!

Thank you to all of our amazing participants, teams, supporters, volunteers and donors for making the 5th 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 fabulous teams! Thank you to our hardworking volunteers!

Check out the race results from the Bryn Mawr Racing Company here!

And their photos!

Check out more pictures from the day here!

And most of all, Thank You from the Run for Hope 5K Committee!

Go to the Run Website here.

2023 Gala of Hope

Thank you for making the ALS Gala of Hope so spectacular!

It was a beautiful evening of inspiration, motivation and HOPE! There are not enough words to express our sincere awe and gratitude to everyone that came out to support the ALS Hope Foundation. The evening was truly a success due to all of you, and we are deeply grateful for your support and generosity.

Our heartfelt thank you to Dr. Stacy Lewin Farber, the keynote speaker, who enlightened us on the true meaning of hope, as she shared her journey with ALS. Her story made us both laugh and cry....but left us knowing that she truly is a force to be reckoned with. We haven't heard the last from her!

A huge thank you to Joel Goldhirsh, our virtual guest speaker. Though he was not able to attend in person, his presence filled the room as he shared his battle with ALS and how it may control his body, but that he refuses to let it control his mind. Through humor and directness, he shared his mission with all of us.

Thank you to David Meissner for speaking about Joel and Your ALS Guide and sharing this important resource for healthcare professionals, patients and caregivers. 

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 festivities. Thank you to the staff at Vie who admirably managed a room full of 300 guests with ease and professionalism. The food was delicious, the room was gorgeous, and every one felt welcome and taken care of. 
And of course, a huge thank you to our 5th Annual Gala of Hope committee members and volunteers who worked tirelessly to ensure every moment leading up to the event and the event itself was a gleaming success. 

A sincere thank you to each and every one of YOU who attended the event, bought a raffle ticket, bid on a Silent Auction item, or donated. We hope you all left knowing that you have made a difference in the work that we do.
 
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. We love and admire you and appreciate your presence. You are why we do what we do. 

These photos are courtesy of Lafayette Hill Studios, follow this link to see more!

International Symposium on ALS/MND Review

The International Symposium on ALS/MND was held virtually December 6-9, 2022. This year's symposium started with a Welcome from Dr. Brian Dickie (UK) and Dr. Ammar Al-Chalabi (UK) of the Motor Neuron Disease Association (MNDA). 

The meeting took place over three days and was a mix of video presentations and posters. During the symposium the results of several clinical trials were presented and Dr. Heiman-Patterson's review of four of these, RNS60, low dose IL2, CNM Au8, and Toferson can be found here.

First the 24 week trial RNS60 which functions as a neuroprotective and anti-inflammatory molecule examined biomarkers of inflammation and neurodegeneration along with the ALSFRS, FVC breathing test, quality of life and survival. In the 147 pALS enrolled there was a decrease in the decline in FVC in the participants treated with RNS60. There was no change in the biomarker of neuronal degeneration (Nfl). There was no difference in global function or survival although this trial was not powered to detect such a difference.

The second trial that was presented was low dose IL2 which acts as an anti-inflammatory through its activity on Treg cells. The primary objective of this trial was efficacy and safety over 18 months along with the effects on Treg. The results demonstrated an increase in Tregs along with a decrease in the risk of death when adjusted based on the phosphorylated neurofilament in the spinal fluid the effect was significant and increased to a 73% decrease in survival. The benefit was greatest in pALS with the lowest levels of phosphorylated neurofilament

The long awaited results of the Rescue ALS trial of CNM Au8 were also presented. This agent improves energy production and supports mitochondria. In this 36 week trial 45 pALS were randomized to treatment and there was a slowing in the decline of the ALS FRS score along with improved quality of life. In addition, there was a decrease by 70% in all cause mortality in those pALS treated both in the study and the open label period compared to those who were initially on placebo. Previously, CNM-Au8 was evaluated in the Healey Trial over 24 weeks, but did not meet its primary and secondary end points; however, the therapy did show survival benefit on exploratory analyses. Additional phase 3 studies are under consideration.

Finally there was additional data presented on Toferson from the Phase 3 trial. This agent is a splice modulating oligo that blocks SOD1 and has been developed to treat familial ALS associated with a SOD1 mutation. It was demonstrated that SOD1 protein is decreased by 8 weeks on treatment and remains decreased while the marker of neurodegeneration, NFL, shows a decrease by 12 weeks. Further, when the levels of NFL are considered, treated pALS demonstrated improvements in the decline of ALSFRS, strength measures and vital capacity as well as quality of life during the extended open label phase. This is important because it suggests that there are biological effects that occur prior to the clinical improvements. Toferson is now being evaluated for approval by the FDA.

Dr. Rick Bedlack (USA) received the Forbes Norris Award and Dr. Heiman-Patterson commented: “I was extremely happy to hear that this year’s winner of the Forbes Norris Award was Dr. Richard Bedlack. This prestigious international award is named for Dr. Forbes “Ted” Norris, a neurologist who dedicated his career to helping people with ALS/MND, and it is awarded annually to a neurologist who provides compassionate excellence in care and has contributed to the understanding and treatment of ALS/MND. Dr. Bedlack is extremely deserving of this recognition and I am proud to work with him on our Clinical Research Learning Institute and ALS Untangled.”

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.