Welcome to the Alliance newsletter, packed full of member updates! Because of its length, you might want to read this newsletter using your browser. View this email in your browser
A Message from the Chair
Calaneet Balas, ALS Association, USA
As we enter the third year of the COVID pandemic, the entire world is getting a crash course in some of the challenges that the ALS/MND community faces – availability of medications, regulatory hurdles, a segment of the population that is apathetic, mental and physical fatigue, long-term health effects, losing loved ones, and the dread of not knowing when things will change for the better. Much of the world has begun to learn to live with COVID. Our ALS/MND community has been focused on making ALS livable for as many people as possible – and making the experience for someone diagnosed with ALS/MND today fundamentally different than someone diagnosed even just two decades ago. We have a lot of work to do, but we are making progress. And we can only do it by working together.
In that spirit, I would like to introduce you to the Alliance's 2022 Board of Directors that I have the pleasure to serve alongside. I would firstly like to extend my sincerest thanks to Gorrit-Jan Blonk and Tammy Moore who are retiring from the Board after 6 years each of service. I would also like to welcome our newly elected members, Hilmi Uysal, who joins us from Turkey, and Lung Kuo who joins us from Taiwan. Returning to the Board are David Ali (Honorary Treasurer & Vice Chair), Gudjon Sigurdsson, Evy Reviers, Andrea Pauls Backman, Nick Goldup, Pablo Aquino and Marcela Santos. I can't wait to continue working alongside these passionate, hard-working leaders.
Thank you for all you are doing to making ALS/MND livable for ALL while we urgently pursue new treatments and cures.
Calaneet Balas
Alliance Chair
A Message from the Executive Director
Cathy Cummings, International Alliance of ALS / MND Associations
Goodbye 2021, and hello 2022! I hope you all took the time to re-charge and re-energize as we head into this fresh new year.
Planning is well underway at the Alliance for the 2022 year and we can't wait to share what we have in store for you!
Up first is our webinar series. We will be conducting 9 webinars over the course of 2022 that will focus on topics such as care, cure, and genetics. Visit our webinars webpage for more details and to register to attend at no cost.
Our finale at the end of 2022 is our annual conference. We're keeping our fingers crossed that we will be able to gather in-person in San Diego, California, USA. However, no matter what 2022 brings, we will be offering a virtual component to the conference so that attendees will be able to join us from anywhere in the world.
Cathy Cummings
Executive Director
What We're Up To
Translation
The ability to offer all of our programming in multiple languages is always an important conversation at the Alliance.
We're very pleased to announce that we will be offering captions in English and Spanish for our 2022 Webinar series!
We hope you'll join us and provide feedback so we may work towards offering all Alliance offerings captioned in multiple languages!
After 3 years, Radicava is covered by all provinces in Canada
As of November 2021, ALL provinces and territories across Canada - and Veterans Affairs Canada and Indigenous Services Canada - are now covering Radicava (edarvone) through their public formularies.While a positive step forward in access to ALS therapies, it took over three years from Health Canada approval for all provinces to cover the therapy through their public drug plan. This timeframe is far too long and underscores the importance of creating streamlined processes where ALS therapies get to Canadians in a timeframe that more accurately reflects the urgency faced by this community.
Our recently published position paper, The Time is Now, reflects on the experience with Radicava and explores the complexity of Canada’s drug access processes, proposing two solutions to get Health Canada approved therapies to Canadians living with ALS faster.
ALS Canada invests in a hybrid support and services model during COVID-19
The in-home support that the ALS Society of Canada provides to people living with ALS helps to fill gaps in the healthcare system. Informed by the lessons learned through the pandemic, we are strengthening support for Ontarians living with ALS thanks to a year-long grant from the Ontario Trillium Foundation's Resilient Communities Fund. The grant will help ALS Canada adapt the delivery of programs and services to address the evolving reality of COVID-19. A new service delivery model means ALS Canada staff can sustainability provide a blend of in-person and virtual services, leveraging the best of both service formats to better meet the needs of the community.
Associação Pró-Cura De ELA: 2021 Year in Review: Full of Incredible Actions!
Check out a summary of the main actions undertaken last year!
February: month of Rare Diseases, we organized a week of daily live stream with volunteer health professionals from Pró-Cura, answering questions of family members, caregivers and people with ALS.
April: we launched the "EMBRACE THIS CAUSE" campaign with government agencies to ensure that people with ALS and their caregivers receive the COVID-19 vaccine quickly. We won, they included people with ALS in the priority group.
June: we celebrate Global ALS/DNM Awareness Day by holding the 6th Annual ALS Symposium completely online and free of charge, with the participation of three international researchers, Dr.Al-Chalabi, Dr.Paganoni and Dr.Bedlack, in addition to Brazilian doctors and the team of Pró-Cura, presenting topics related to their area. More than 1,300 registers.
June 21: we launched, without an end date, the MY MOVEMENT IS PRO-CURA campaign, saling sports t-shirts to publicize the ALS, the Association Pró-Cura and raise funds.
July: we announced the Sponsored Genetic Testing Program for Neurodegenerative Diseases in Adults, from the company INVITAE, California, totally free for people with ALS. It is a program never done in Brazil.
October: we launched a Sponsorship Project for the purchase of 10 Life Support Ventilators and 10 Cough Assists, to be loaned to ALS patients.
December: we participated in the 32nd International ALS Symposium. Then we did a live stream with the participants reporting what was exposed at the symposium.
Sponsor - Project to buy Respiratory Devices
Member Update: Associación ELA Argentina
The 2022 International Teleconference Program is Ready for kick Off!
The International Teleconference Program of Asociación ELA Argentina will start its new edition. Last year we had 7 wonderful conferences with ALS/MND experts Sabrina Paganoni, Angela Genge, Pamela Shaw, Eduardo Locatelli, Adrian Israelson, Gary Pattee and Paul Mehta. The first conference this year will be in March with Dr. Terry Heiman-Patterson.
Watch the subtitled conference of Dr. Paul Mehta from the CDC here.
More International conferences Translated into Spanish by Associacion ELA Argentina
The Asociación ELA Argentina continues providing professional human translations of the most relevant ALS/MND research conferences from English into Spanish for all the Spanish speakers in our global ALS/MND community.
Dario Ryba, President of the ALS/MND Association of Argentina, was interviewed by different national TV stations to talk about the disease and the work of our Association. There were two recent cases in our country of high public impact: National Senator Esteban Bullrich confirmed its ALS diagnosis and famous rock drummer Martin Carrizo passed away of ALS.
ALS Association-Funded Research Shows Link Between Football and ALS
Research funded by The ALS Association found that NFL players are four times more likely to be diagnosed with ALS. Read more here.
PRO-ACT Database Wins Healey Center International Prize for Innovation in ALS
The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database recently received the Healey Center International Prize for Innovation in ALS. The PRO-ACT database was created by the nonprofit Prize4Life, which was launched by Avi Kremer, a consultant with The ALS Association. Read more here.
ACT for ALS Passes After Heroic Efforts of ALS Advocates
Thanks to the hard work of ALS advocates in the US, Congress has passed the Accelerating Access to Critical Therapies (ACT) for ALS Act after a unanimous vote in the Senate. The bill previously passed in the House 423-2. Read more here.
For up-to-date information about ALS research, the projects we fund, and the numerous focus areas we support, sign up for our monthly e-newsletter, Research Matters.
Stay up to date with the latest ALS care news by signing up for our quarterly e-newsletter, Care Matters.
Member Update: Associazione conSLAncio Onlus
Associazione conSLAncio Onlus, founded by Andrea Zicchieri, presented a poster (CMS-09) at the 32nd International Symposium on ALS/MND and at the 2021 Alliance Annual Meeting for the second consecutive year. It is the first time an Italian, all volunteer patient led association has ever done so. We showcased the 2021 launch of Italy’s first free online caregiver training program for ALS and complex fragile patients available 24/7. The program was engineered using our Design-Build project delivery system which has proven beneficial in developing new initiatives to help the Italian ALS community.
At #alsmndsymp, we learned the wonderful news of our scientific adviser, Dr. Silvia Pozzi, PhD of the CERVO Brain Research Centre, Universitè Laval, QC, Canada winning the 13th Paulo Gontijo Award 2021. Her winning manuscript, “Monoclonal full-length antibody against TAR DNA binding protein 43 reduces related proteinopathy in neurons” was published in the Journal of Clinical Investigation Insight. 2020 Nov 5;5(21):e140240.doi: 10.1172/jci.insight.140420. We are proud of Dr. Pozzi and are most grateful for her involvement in helping the ALS community.
We appreciate the extraordinary efforts of all the patients, caregivers, and volunteers worldwide who help us achieve our mission: Julio C. Ayala, Ilaria Barone, Richard Bedlack, Mattia Belloni, Alessandro Boaro, Francesco Boccalatte, Lara Brambilla, Valentina Cattero, Simone Cimino, Pier Paolo Comida, Silverio Conte, Paola Contessa, Angelica D’Amore, Fabiola De Marchi, Angela Desiderato, Nicoletta De Rossi, Vittoria A. Farallo, Ilaria Ghiro, Nicolò Giordano, Ester Luna, Ilaria Luna, Sean Mannion, Nicola Marinelli, Paola Mastracco, Deborah Metzel, Elisabetta Mezzalira, Peter G. Nalepa, Ostap Nalysnyk, Cristina Onesta, Alessandra Pecora, Tiziana Petrozziello, Nicoletta Pireddu, Aleh Plotnikau, Silvia Pozzi, Elisabetta Pupillo, Giulia Supino, Luca Zampedri e Cinzia Zicchieri.
conSLAncio is proud to be part of the Alliance’s 30th anniversary in 2022. We can’t wait to share more exciting news soon.
In 2021, we made amazing strides in ALS research, care, and education. We’ve been able to expand our reach and our support to people living with ALS and their families. Our efforts are making a profound impact not only in the lives of those living with ALS and their families, but in ALS research and clinical trials.
In 2021, we hit new and important milestones:
The Les Turner ALS Center at Northwestern Medicine launched its new Research Pilot Grant Program, awarding the most promising early-stage ALS research projects to a broad group of seven scientists and increasing its commitment to research by 16%!
The Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine offered 15clinical trials and research studies this year, including the HEALEY ALS Platform Trial.
We created the first-of-its-kind, My ALS Decision Tool™ and six new information guides in collaboration with people living with ALS, caregivers, advocates, researchers, and clinicians.
Our experienced Support Services team of nurses and social workers more than doubled its personalized visits over last year, providing essential assistance to people and families living with ALS.
Our monthly ALS Learning Series webinars have over 3,000 views since its launch a year ago!
Participation in our Support Groups nearly doubled, providing people living with ALS and their families the ease of virtual delivery of support groups.
Every day, we partner with people impacted by ALS. Together we continue our collective work in pursuit of a world free of ALS.
Member Update: MND Association
2022 marks an important year for the MND Association, as we commit to five promises that focus our efforts and harness the hope within our community for a world free from MND. Our promises have been shaped by our community, and from now onwards, they will power everything we do. We look forward to working with our Alliance partners and colleagues to help us deliver on these bold and ambitious promises.
We promise we won’t rest until:
Promise 1: MND is treatable and ultimately curable
We are seeking new collaborative drug discovery and development projects, helping to fund and facilitate the research that is taking us ever closer to uncovering the causes of MND, effective treatments and ultimately a cure.
Promise 2: Everyone gets the care they need when they need it
Co-ordinated multi-disciplinary care is the very best way to ensure a person with MND has access to all the healthcare professionals they need, at the right time. Our 22 care networks across England, Wales and Northern Ireland provide this. But not everyone with MND has access to the same level of support. That must change.
Promise 3: Every day with MND counts
For people with MND, technology can help life be the best it can. The MND Association Think Tank is working with tech giants from around the world to find solutions to real-life problems.
Promise 4: You are heard
If we shout louder and to the right people, things will change. If we all join together we can’t be ignored.
Promise 5: No one faces MND alone
We will work to break down barriers that prevent people with and affected by MND from accessing the help and support they need.
You can find out more about our promises and keep up to date with their progress on our website.
The ENCALS meeting will be hosted in Edinburgh, Scotland, from Wednesday 1st to Friday 3rd of June 2022.
At the ENCALS meeting (European Network to Cure ALS) you’ll be updated on the latest ALS research from researchers around the world. There are inspiring talks, debates, poster presentations and lots of network opportunities. Early bird registration is possible until March 18, 2022.
Interested in presenting your research here? Abstract submission is now open and possible via the ENCALS website. Deadline for submission is March 18, 2022.
Last December 16th we had the last meeting of UNELA – Union of Latin American ALS Associations – in 2021. Unfortunately, in the last two years, all of our meetings have been virtual, because of the covid-19 Pandemic. But we hope to meet in person between the 22nd and 24th of April, in Lima, Peru, at an event hosted by “Asociación ELA Peru”
UNELA is fundamental for the integration and strengthening of the actions of the Associations of the member countries. Now in 2022 we will have the First Symposium of UNELA Professionals, where each member association will contribute with professionals such as scientists, neurologists, nutritionists, physiotherapists, speech therapists, occupational therapists and psychologists, and will be broadcast on social networks of UNELA and member associations.
UNELA integrates seven associations from six Latam countries: Argentina, Brazil (2 Associations) Chile, Colômbia, Mexico and Peru. In addition to integrating and strengthening the actions of the associations, other missions of UNELA are: To develop contact networks; train human resources to improve the quality of life of people with ALS in Latin America; promote fundraising actions; to generate unique protocols for the treatment of people with ALS; to boost regional statistics and, finally, to influence public policies in the area of health and social inclusion in member countries.
We are absolutely certain that UNELA as well as the other existing regional ALS networks will be fundamental to our common objective: A WORLD FREE OF ALS/MND.
EUpALS Webinar on Genetics Testing in ALS
Attend the EUpALS webinar on genetic testing in ALS!
Realistic hope is on the horizon for genetically defined subgroups of ALS patients, as multiple antisense oligonucleotide (ASO) based ALS therapies are under clinical clinical development.
Therefore, EUpALS organises on Wednesday February 23, 11h00 tot 12h30 CET/Brussels time a free and open to all scientific webinar on genetic testing in ALS.
Do you wish to participate? We like to receive your interest before Monday February 21 via info@als.eu, upon we will provide you the programme and dial in link. See you then!
Update from PACTALS
The 2nd Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) International Conference was held virtually from 17-18 September 2021, hosted by Professor Gen Sobue from Aichi Medical University, Nagoya, Japan.
The theme, “Towards therapeutic development of ALS – an Asian-Oceanian perspective” aimed to promote collaboration amongst clinicians, researchers, care support personnel and patient groups within the Asia-Oceania ALS community through collaborative research and clinical trials. There were 46 invited speakers from our member PACTALS countries as well as from Europe/USA. The response was remarkable with more than 1,104 participants from 36 countries and 145 e-posters presentations.
The program included the latest updates on clinical trials in ALS, the molecular and genetic contributions in the pathogenesis of ALS as well as the presentation of the latest ALS diagnostic criteria. There was also a session moderated by David Ali, Vice Chair of the International Alliance bringing together patient advocacy groups from Japan, Korea, Singapore and Malaysia. The final clinical session highlighted some of the inequities that exist in some of our member countries where access to quality healthcare, multidisciplinary care and clinical trials are limited, with discussions on measures that might help address some of the gaps that currently exist.
Professor Sobue closed the Conference by expressing his heartfelt thanks to all participants and look forward to the next international PACTALS meeting in 2023.
Rare Disease Day 2022 - "Innovation in Rare Disease: How Can Europe be a Global Leader?"
As we approach Rare Disease Day 2022, EURORDIS - Rare Diseases Europe, EU40 - The Network of Young MEPs and Biogen came together to bring broad political attention to innovation in rare diseases and, together with Euronews, will host the virtual debate “Innovation in rare disease: How can Europe be a global leader?” on 15 February at 3 pm.
With the French Presidency of the EU making rare diseases a priority on their programme and the upcoming review of the orphan legislation, the event intends to encourage a debate on how Europe can play a central role in rare disease research and innovation and how this can impact the quality of life of people living with a rare disease in Europe, including ALS. The event will bring together high-level representatives from the European Commission, the European Parliament, EU Member States, industry, and patient advocates. We have also invited Doddie Weir, a former professional rugby player and fantastic advocate for ALS, to contribute to the debate.
You can register to the event at this link and please share it with your community.
As of November 2021, ALL provinces and territories across Canada - and Veterans Affairs Canada and Indigenous Services Canada - are now covering Radicava (edarvone) through their public formularies.While a positive step forward in access to ALS therapies, it took over three years from Health Canada approval for all provinces to cover the therapy through their public drug plan. This timeframe is far too long and underscores the importance of creating streamlined processes where ALS therapies get to Canadians in a timeframe that more accurately reflects the urgency faced by this community.
The in-home support that the ALS Society of Canada provides to people living with ALS helps to fill gaps in the healthcare system. Informed by the lessons learned through the pandemic, we are strengthening support for Ontarians living with ALS thanks to a year-long grant from the Ontario Trillium Foundation's Resilient Communities Fund. The grant will help ALS Canada adapt the delivery of programs and services to address the evolving reality of COVID-19. A new service delivery model means ALS Canada staff can sustainability provide a blend of in-person and virtual services, leveraging the best of both service formats to better meet the needs of the community.
At #alsmndsymp, we learned the wonderful news of our scientific adviser, 
