News

A $200,000 Partnership between the Foundation and NeuroSphere

A $200,000 Partnership between the Foundation and NeuroSphere

The Ataxia Charlevoix Saguenay Foundation and NeuroSphere are pleased to announce a strategic and financial partnership of $200,000 to support Dr. Benoit Gentil’s research project. This partnership, described as innovative and with high potential, aligns perfectly with the respective missions of the Foundation which aims to support the development of a treatment for ARSACS and the NeuroSphere group, whose objective is to promote innovative projects in neuroscience. Communique.

Thank you Mr. Riverin and Tremblay for supporting ARSACS !

Thank you Mr. Riverin and Tremblay for supporting ARSACS !

Thank you to Mr. Benoit Riverin and Mr. Jean-François Tremblay for organising a fundraiser to support ARSACS research. Their initiative raised awareness in the community and contributed to a cause that is close to our hearts. An amount of $6,150 was raised during an auction held on February 25th in Jonquière.

Thank you to all donors and to Mr. Marco Houde, Olivier Houde and Gabriel Paquet who spoke at this event. Their testimonials have been inspiring.

Photo : Funds given to the Foundation

L to R : Mr. Benoit Riverin, Sonia Gobeil from the Fondation and Mr. Jean-François Tremblay.

An exercise program for individuals affected by ARSACS

An exercise program for individuals affected by ARSACS

The Foundation and the GRIMN research team is pleased to introduce an exercise program tailored specifically for individuals affected by ARSACS. According to the medical community, an exercise program developed according to the person’s capabilities can improve the physical condition.

Before starting the program , it is crucial to undergo an assessment conducted by a qualified physiotherapist. The first part of the document provides the physiotherapist with the procedures for the evaluation and assignment of the initial level of difficulty of the exercises. The exercise program is divided into 3 areas (sitting balance, standing balance and sitting-standing transfer) with photos and videos.

The document will open in French but the reader can select the language on the right side of the screen (view the program either in French or English). EXERCISE PROGRAM

Omaveloxolone being tested on ARSACS mouse – Drs Schmahmann and Lin ‘ research project

Omaveloxolone being tested on ARSACS mouse – Drs Schmahmann and Lin ‘ research project

This project is jointly funded by the Ataxia Charlevoix- Saguenay Foundation and the Massachusetts General ARSACS Fundraiser, fund created by families in the USA. Recent studies and clinical trials have demonstrated that omaveloxolone (brand name Skyclarys) can improve clinical symptoms in Friedreich’s ataxia. Drs. Schmahmann and Lin from Harvard University will administer Skyclarys to a mouse model of ARSACS and investigate whether Skyclarys can change the disease course in these mice. We believe the findings of the proposed study will be critical in determining whether omaveloxolone is appropriate for clinical trials in ARSACS.

Join Ally’s initiative in making a difference

Join Ally’s initiative in making a difference

By purchasing Ally’s special ARSACS promotion items, you not only get a fantastic product but also contribute directly to the ARSACS cause. Every item you buy goes towards supporting the ARSACS research. Visit actionforally.com to browse the collection and make a purchase today.

PROSPAX Natural History Study

PROSPAX Natural History Study

The PROSPAX (PROgression chart of SPAstic ataXias) project, which focuses on ARSACS and SPG7 ataxias , is a collaborative effort between neurologists across several sites throughout Europe and Canada. The overall aim is to gain a better understanding of how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions . This is called ‘trial-readiness’. The Foundation is the Patient Advocacy Organisation on that project. More details .

ODV finances ARSACS research

ODV finances ARSACS research

The Organizzazione di volontariato (ODV) finances Dr. Roberto Giambruno’s research “Alterations of SACSIN RNA-binding properties are connected to the development of ARSACS” in 2024-2025 .

ODV, a volunteer organization in Italy founded by Susanna Deluca and Dr. Paolo  Arrigoni, a member of the Foundation’s Board, is dedicated to the ARSACS cause. Fondazione Telethon is an Italian non-profit organization which finances scientific research projects on rare diseases. 

Mrs. Carole Gailloux joins the Foundation’s Board

Mrs. Carole Gailloux joins the Foundation’s Board

The Ataxia Charlevoix- Saguenay Foundation is pleased to announce that Mrs. Carole Gailloux has joined its Board of Directors. “Mrs Gailloux brings a wealth of experience and expertise to our team with a skill set that will undoubtedly enrich our Board strategic planning efforts” mentionned Jean Groleau, president.

Submit your ARSACS Research Proposal

Submit your ARSACS Research Proposal

The Foundation is inviting researchers to submit their ARSACS projects. We are seeking innovative and impactful research projects that will contribute significantly towards the development of a treatment for ARSACS. New this year: “start-up financing offer” (Seed Grant) in addition to the standard financing grant.

To submit your proposal :

Application Form

ARSACS Call for Proposal

Submission Deadline: May 24, 2024

Dr. Marc Rivière joins the Foundation’s Board

Dr. Marc Rivière joins the Foundation’s Board

The Ataxie Charlevoix-Saguenay Foundation is very pleased to announce that Dr. Marc Rivière has joined its board of directors. An executive with extensive experience creating and managing clinical programs, Dr. Rivière’s expertise encompasses all aspects of drug development.

His experience in clinical trials and his knowledge of the pharmaceutical industry could make a significant contribution to the advancement of work on ARSACS. Dr. Rivière is a General Partner and Chief Medical Officer at TVM Life Science Management.

Harvard University invites you  to participate in an important ARSACS research survey

Harvard University invites you to participate in an important ARSACS research survey

This invitation is opened to all participants around the world, not limited to USA patients. Looking for people who are 18 years or older who speak English and have a confirmed ARSACS diagnosis . The objective is to interview all participants (1 hour video call) in the next 6 weeks. For details click here.

To participate in the survey or if you have any questions, please contact the study coordinator.

Thank you very much for considering participating in this study. Your contribution is very valuable to our research efforts.


Friends coming together for a cause

Friends coming together for a cause

During this Holiday Season, here is an inspiring video of friendship, generosity and community support for the ARSACS cause. Last Fall, Gabriel and Olivier , two childhood friends, took up the Défi Charlevoix- Saguenay and raised $15, 000 for ARSACS research. Congratulations Gabriel and Olivier for your accomplishment and thank you to all volunteers, partners and donors! (Video in French only)

Dr. Desnoyers joins the Foundation’s Board

Dr. Desnoyers joins the Foundation’s Board

The Ataxia Charlevoix-Saguenay Foundation is pleased to announce the newest member of its Board of Directors. As vice-president at Neuron23, Dr. Luc Desnoyers is leading the biomarker and diagnostics efforts to move programs from the late-stage research to clinical proof of concept. He has a vast experience in the biopharmaceutical industry.

“Dr. Desnoyers, with his specific areas of expertise, will contribute to our strategic directions and be instrumental in helping us prepare for clinical trials”  mentioned Jean Groleau, president of the Foundation.

Diner des Producteurs raised $1.1 M for ARSACS!

Diner des Producteurs raised $1.1 M for ARSACS!

The funds raised will play a crucial role in funding research projects and paving the way for a clinical trial. Therefore, bringing us one step closer to providing hope and relief to those affected by ARSACS. We want to express our deepest gratitude to our donors, partners and dedicated volunteers who worked tirelessly to make this event a success. This achievement would not have been possible without each and every one of you. (Photo by Vincent Morreale)

Give for ARSACS Research this Giving Tuesday!

Give for ARSACS Research this Giving Tuesday!

This Giving Tuesday, we are rallying support for ARSACS research—a cause that holds immense significance for those affected by this rare genetic condition. Your contribution, no matter the amount, can play a crucial role in funding research that brings us closer to a clinical trial and finding a treatment. By supporting ARSACS research, we are investing in hope and progress. Join us in making a difference. To donate please visit Donate now.

Thank you for your contribution.

Gene Therapy – what is it?

Gene Therapy – what is it?

As part of the TREAT ARCA project, a webinar was held in September 2023 to demystify the world of gene therapy!. It was designed to break down the complexities of gene therapy into easy-to-follow concepts. Discover its potential to shape the future of medicine. Gene Therapy webinar.

ARSACS International Symposium – A Great Success!

ARSACS International Symposium – A Great Success!

200 registrants at the Symposium, a scientific event on ARSACS research. The discussions were dynamic and highlighted the latest advancements in research. The symposium definitely fostered collaborative thinking. The active participation, insightful contributions, and enthusiasm made the event truly exceptional. “Thank you to all the researchers, neurologists, patients and their families, sponsors and the public who participated and worked towards improving the well-being of people affected by ARSACS. Special thanks to the Neuro for its valuable support in organizing this event” Sonia Gobeil, co founder of the Foundation . View the recordings of the event: ARSACS Symposium Oct 19, Oct 20 am, Oct 20 pm. Some presentations.

2 more weeks to submit your research project

2 more weeks to submit your research project

Deadline: November 23, 2023 to submit your project. The ARSACS Organizzatione Di Volontariato (ARSACS ODV) in collaboration with Telethon is financing “seed” research projects for a 12-month period with a maximum budget of €50,000. More details.

Me Jean Groleau is appointed Chair of the Board of Directors at Catalis

Me Jean Groleau is appointed Chair of the Board of Directors at Catalis

“I am pleased to have the opportunity to ensure that in every major decision the organization makes, the needs of patients and care givers will be considered. As the parent of children with a rare disease and co-founder and president of a foundation dedicated to medical research, I recognize the importance and, above all, the urgency of accessing new innovative medical therapies” mentioned Me Jean Groleau during his appointment to the board of directors of Catalis.

Launched in 2017, CATALIS’ mandate is, among other things, to facilitate collaboration between the various actors and to accelerate the development of innovative treatments.

OVD partner with Telethon to fund ARSACS research

OVD partner with Telethon to fund ARSACS research

The ARSACS Organizzatione Di Volontariato (ARSACS ODV) in collaboration with Telethon is pleased to announce an opportunity for researchers to work on ARSACS . The initiative aims to finance “seed” research projects for a 12-month period with a maximum budget of €50,000. The organisation of volunteers, created in December 2018 in Milan, works very closely with the Foundation. Deadline: November 23, 2023. More details.

Congratulations Gabriel and Olivier !

Congratulations Gabriel and Olivier !

Gabriel Paquet- Desbiens and Olivier Houde , two childhood friends, accomplished their Défi Charlevoix- Saguenay to help finance research for the Charlevoix- Saguenay Ataxia, from which Gabriel is affected. They covered 143Km by cycling or jogging last weekend. The Foundation thanks the two champions for their courage as well as the volunteers, partners and donors who contributed to this success! Article ( French Version only).

Still time to register to the ARSACS International Symposium on October 19- 20, 2023

Still time to register to the ARSACS International Symposium on October 19- 20, 2023

A great opportunity to learn about the latest advancements in ARSACS research and to meet the ARSACS research team. You can attend this free scientific symposium either in-person or on-line.  New this year, a panel discussion with ARSACS patients, carers and partners.

Register now.

View the program.

We hope to see you there!                                                                                                                                                                                                                            

Thank you to Rio Tinto and business entrepreneurs in Saguenay!

Thank you to Rio Tinto and business entrepreneurs in Saguenay!

As part of a program at improving worker health, Rio Tinto et 3 business companies from Saguenay donate $2,887.50 for ARSACS research. Thank you to the donors and the organizers for their generosity.

Photo from L to R, Mr. Etienne Fortin (Rio Tinto), Georges Perron (JE Perron), Carl Émond (Claveau et Fils), Jeannot Savard (Excavation de Chicoutimi Inc.), Gabriel Paquet (Défi Charlevoix-Saguenay) and Carl Bourgeois (representing the Ataxia Charlevoix-Saguenay Foundation).  

Register now ! 2023 ARSACS Symposium

Register now ! 2023 ARSACS Symposium

Join us for an unique opportunity to learn about the latest advancements in ARSACS research.

As an accredited satellite meeting of the 2023 World Congress of Neurology (WCN), the ARSACS Symposium will be held immediately following the WCN on October 19 -20 in Montreal. It is a free scientific in-person and virtual event open to all.

To view the program.

Registration open now.  

We hope to see you there!                                                                                                                                                                                                                            

PROSPAX project presented at the ICAR and AGI conferences

PROSPAX project presented at the ICAR and AGI conferences

The International Congress for Ataxia Research (ICAR) and the Ataxia Global Initiative (AGI) were held between November 1st – 4th 2022 in Dallas, Texas, USA.

In order to become ready for clinical trials, it is important that outcomes can measure the progression of ataxia and any response to treatment. At the ICAR conference , PROSPAX coordinator Professor Matthis Synofzik gave a presentation on developing outcomes that are meaningful and relevant to people. He presented the results of two PROSPAX surveys which were completed by people with ataxia and HSP.

At the Ataxia Global Initiative (AGI) Conference , Professors Synofzik and Schüle presented the PROSPAX natural history study data from 97 people with SPG7 and 72 people with ARSACS. Highlights of the conferences.

Highlights from the ICAR and Ataxia Global Initiative Conferences

Highlights from the ICAR and Ataxia Global Initiative Conferences

In November 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR) in Dallas, Texas, USA, one of the largest gatherings of ataxia researchers to date. The Ataxia Global Initiative (AGI) conference was held immediately after ICAR 2022. Both conferences included researchers, pharmaceutical companies and patient group representatives. Highlights of the conferences.

Dr. Chapple’s research using AI technology published

Dr. Chapple’s research using AI technology published

Dr. Paul Chapple’s research article “AlphaFold predicted structure of the Hsp90-like domains of the neurodegeneration linked protein Sacsin reveals key residues for ATPase activity was published in Frontiers in Molecular Biosciences in January 2023. The research team used a new technology, AlphaFold – an AI program which performs predictions of protein structure, to look more closely at Sacsin structure and whether it is really like a Hsp90 molecular chaperone, which the data indicates it is. The research on Sacsin/ARSACS was supported by grants from the Ataxia Chalevoix-Saguenay Foundation.

Let’s support Gabriel and Olivier

Let’s support Gabriel and Olivier

Gabriel Paquet Desbiens and Olivier Houde launched a huge challenge to raise funds for the Foundation to pursue its mission. These two childhood friends will cycle or run from Baie St-Paul to Ville de la Baie in three days starting September 15. Gabriel is affected by ARSACS. Article Quotien.

Let’s support them by making a donation via GoFundme Défi Charlevoix-Saguenay.

Thank you for your generosity.


Sami Fruits Foundation donates $50,000 for Ataxia Research

Sami Fruits Foundation donates $50,000 for Ataxia Research

As part of the Sami Fruits pour les Petits Foundation 2022 Gala, Mr. Flavio Condo, director of the Foundation, presented on February 8 a $50,000 check to Mrs. Sonia Gobeil from the Ataxia Charlevoix-Saguenay Foundation. This amount will directly contribute to the financing of research projects geared to find a  treatment. The Ataxia of Charlevoix-Saguenay Foundation wishes  to thank the Sami Fruits Foundation for this important contribution. “This is a major support” highlighted Sonia Gobeil.

$1.1M raised for ARSACS Research –  Thank you !

$1.1M raised for ARSACS Research – Thank you !

On behalf of the persons living with ARSACS, their families and the Foundation, thank you to all of you for your generosity : Mr. Vincent Chiara, Honorary president, sponsors, partners, donors and volunteers. With your support, the Foundation can pursue its mission to develop a treatment for ARSACS. The Diner des Producteurs , a major fundraising event, was held in Montreal on October 27, 2022.

Thank you !

Thank you !

Thank you for participating in the PROSPAX surveys! There was a good response and your input will be used to develop an assessment tool to measure changes in a person living with ARSACS over time. Survey results.

PROSPAX and TREAT-ARCA Meeting in July 2022

PROSPAX and TREAT-ARCA Meeting in July 2022

In July 2022, the PROSPAX and TREAT-ARCA consortia held a joint annual meeting in Berlin, Germany, including researchers, clinicians, and representatives from Euro-ataxia and the Ataxia Charlevoix-Saguenay Foundation. A fantastic opportunity for researchers around the world to meet, discuss ideas, and together contribute to research advancement. Summary.

Dr. Babu’s ARSACS article published

Dr. Babu’s ARSACS article published

Dr. Mohan Babu’s article was published by Elsevier in September 2022. Dr. Babu is part of the ARSACS research team and has received funding from the Foundation for this project. Elsevier is an academic publishing company specializing in scientific, technical, and medical content.

ARSACS around the word

ARSACS around the word

30 countries are represented in the ARSACS International Patient Registry. Map of registrants. To all of you who are registered, thank you for your participation and for helping the research. The registry is an essential tool for advancing research and for clinical trials.To register.

Dr. Houry’s research report

Dr. Houry’s research report

“Structural Determination and Super Resolution Imaging of Sacsin” research report under the leadership of Dr. Houry from the University of Toronto and funded by the Foundation in 2021-2022.

TREAT- ARCA Research Project

TREAT- ARCA Research Project

The TREAT-ARCA project, which began in June 2021, is a pre-clinical research project focused on two rare ataxias: ARSACS and COQ8A-ataxia. The objectives are to test promising repurposed and novel drugs for ARSACS, to test gene therapy and identify and validate biomarkers. The Foundation is pleased to represent  the ARSACS patients on the research project. Project Description.

PROSPAX Survey – Deadline extended to March 6

PROSPAX Survey – Deadline extended to March 6

Thank you if you have completed already the PROSPAX survey #2.

We still need a greater representation of people with ARSACS for the research. Therefore, the deadline has been extended to Sunday March 6. Please take few minutes to provide your insight so people with ARSACS are well represented in the survey. English survey.

The survey is also available in several languages. Links

Thank you for your collaboration.

PROSPAX Phase 2  Survey

PROSPAX Phase 2 Survey

Make your voice heard. Let researchers know what is important to you and how you feel living with the condition.
You do not need to have completed the first survey to fill out this survey.  A parent of a child can fill out the survey. PROSPAX is a 3 year international project  focusing on ARSACS and SPG7. Click on button below to participate.

All together we can advance ARSACS research. Thank you for your participation.

PROSPAX Phase 2 Survey

ARSACS research featured on CBC Radio

ARSACS research featured on CBC Radio

ARSACS research project, led by Drs. Mckinney ,Watt and Toscano- Marquez, was featured on CBC radio “Let’s Go” on 2022-01-20. As part of the “Understanding the Brain” segment, Rackeb Tesfaye, science columnist at CBC radio and a PHD candidate in neurosciences, provided an overview of ARSACS history and explained the latest discovery made by the McGill research team. “Let Go”

$1.250M net raised for ARSACS research  at the Diner des Producteurs

$1.250M net raised for ARSACS research at the Diner des Producteurs

  ” To all of you : Mr. Marc Bédard, Honorary President, sponsors, partners, donors and volunteers, it is thanks to you that the Foundation can pursue it’s mission. Thank you! ” Jean Groleau , president of the Ataxia Charlevoix-Saguenay Foundation. The Diner des Producteurs, a major fundraising event for the Foundation, was held in Montreal on December 6, 2021.

McGill ARSACS researchers team made a surprising discovery: not all zebrin-negative cells behave the same

McGill ARSACS researchers team made a surprising discovery: not all zebrin-negative cells behave the same

Latest news release from McGill University, Montreal- Researchers at McGill University, lead by Drs. Alanna Watt and Anne Mckinney, have made an important step forward in understanding the cause of ARSACS. “We have shown really clearly that zebrin-negative cells in the posterior vermis were not degenerating,” Watt says. “We did not expect that. We thought eventually zebrin-negative cells in all parts of the vermis would succumb, but it’s just not what we see.” Welcome news for families affected by ARSACS. Research published in Frontiers in Cellular Neuroscience.

Dr. Pandolfo joins the Foundation’s Board

Dr. Pandolfo joins the Foundation’s Board

The Ataxia Charlevoix-Saguenay Foundation is pleased to announce that Dr. Massimo Pandolfo has joined its board of directors. Dr. Pandolfo is Professor of Neurology at McGill University in Montreal since January 2021. Prior, he was Professor of neurology and Director of the Laboratory of Experimental Neurology at the Université Libre de Bruxelles in Belgium.

“Our Board is fortunate to benefit from Dr. Pandolfo’s vast experience on ataxias. His expertise in clinical and genetic study of several rare neurological diseases will be very helpful to pursue our mission” said Jean Groleau, president of the Foundation.

Me Jean Groleau named Vice-President of Catalis Board of Directors

Me Jean Groleau named Vice-President of Catalis Board of Directors

Me Jean Groleau, co-founder and president of the Fondation de l’Ataxie Charlevoix-Saguenay, is proud to join Catalis to represent the needs and challenges of people with rare diseases. Launched in 2017, CATALIS’ mandate is, among other things, to facilitate collaboration between the various actors and to accelerate the development of innovative treatments.

The Foundation needs your support

The Foundation needs your support

The Foundation’s fundraising campaign is underway until the end of December. We need your support to pursue our mission to finance ARSACS research. Together we can work toward the goal of making lives better for individuals affected by ARSACS. Research needs money. Therefore, every donation counts. Please donate . Thank you for your generosity.

Great opportunity to do ARSACS  research in Italy

Great opportunity to do ARSACS research in Italy

The Organizzazione di volontariato (ODV) is offering a seed grant of 50 000€ to finance research on ARSACS in partnership with the Fondazione Telethon . This opportunity is for researchers in Italy. However, a project involving  an international  collaboration  would be eligible also.

ODV,  a volunteer organisation founded by Susanna Deluca and Dr. Paolo  Arrigoni, a member of the Foundation’s Board, is dedicated to the ARSACS cause. FondazioneTelethon is an Italian non-profit organisation which finances scientific research projects on rare diseases.  Application by December 15, 2021.  More details.

$735,000  allocated to 9 ARSACS research projects in 2021-2022

$735,000 allocated to 9 ARSACS research projects in 2021-2022

The Foundation is pleased to announce that 9 research projects will be funded for a total of $735,000 in order to continue ARSACS research. The projects were selected based on their scientific value. It is very encouraging to see the collaboration and the sharing of knowledge between researchers from different countries to advance research. Project description.

Dr. Maltecca’s ARSACS research paper published in Neurology

Dr. Maltecca’s ARSACS research paper published in Neurology

The research, funded by the Foundation and entitled “Assessment of sacsin turnover in ARSACS patients: implications for molecular diagnosis and pathogenesis”, has been done by Fabiana Longo and the group headed by Francesca Maltecca at Ospedale San Raffaele, Milan, Italy. The study shows that sacsin is almost absent in a large set of ARSACS patient skin fibroblasts, regardless of the nature of the mutation. Nascent mutant sacsin undergoes preemptive cotranslational degradation, a mechanism that emerges as a novel cause of a human disease. These findings have important implication for diagnosis and genotype-phenotype correlation. We indeed propose that sacsin levels should be included in the diagnostic algorithm for ARSACS.

Invitation to the ARSACS International  Symposium

Invitation to the ARSACS International Symposium

Invitation to the 6th ARSACS International Symposium to be held on November 4th, 2021.   Keynote speaker Dr. Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration, opened to all. See Program. Please do not hesitate to share this invitation with anyone who could be interested in the latest ARSACS research. Register now .

Radio station 92.5 ckaj is part of the efforts – Donation of $35,000. Thank you!

Radio station 92.5 ckaj is part of the efforts – Donation of $35,000. Thank you!

Mr. Robert Banford, General Manager of the 92.5 ckaj station in Saguenay, made an important donation of $35,000 to the Foundation to continue research and to support Mr. Nicolas Claveau in his fundraising initiatives ands sporting achievements in particular that of crossing Canada in a wheelchair to create awareness of the disease.

From left to right: Ms. Sonia Gobeil, co-founder of the Foundation, Mr. Robert Banford, Executive Director of 92.5, Mr. Nicolas Claveau, volunteer and sportsman and Ms. Claudine Tremblay of station 92.5.

Welcome to the new site!

Welcome to the new site!

Invitation to visit the new site. We hope that it will be easier to navigate where you need to go and will provide the information that you are looking for.

Interview with Sonia Gobeil, cofounder of the ARSACS Foundation

Interview with Sonia Gobeil, cofounder of the ARSACS Foundation

Interview with Sonia Gobeil providing insights on the creation of the Foundation, engagement of research partners, the importance of the patient registry and support groups. Interview was done by Jenny Krahn, University of Calgary for the 2021 Canadian Society for Molecular Biosciences conference to be held June 14-17,2021.

ARSACS research results presented at the 31st International Symposium on ALS/MND

ARSACS research results presented at the 31st International Symposium on ALS/MND

Dr. Gentil and Dr. Durham presented the results of their team’s ARSACS research at the 31st International Symposium on ALS/MND. The research, funded by the Foundation, was the work of Afrooz Dabbaghizadeh and Alexandre Paré.
31st International Symposium on ALS/MND- Theme 03 – In-vitro Experimental Models
Abstract 1 : Effects of sacsin domains, a protein mutated in a neurodegenerative disorder, on neurofilament assembly.
Abstract 2 : Role of chaperone and acetylation levels and therapeutic potential of HDAC inhibitors for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay.

Thank you to all our Volunteers. Your involvement is essential to the Foundation and the advancement of science. Ataxia Charlevoix-Saguenay Foundation

Krogan Lab from UCSF to conduct ARSACS research

Krogan Lab from UCSF to conduct ARSACS research

The Foundation is funding an additional research project: “Discovery of new targets for therapeutic interventions in ARSACS disease” with Dr. Nevan Krogan, University of California San Francisco (UCSF). The one year project is funded in partnership with the UCSF Foundation, Krogan Lab in Honor of Allison Trainor. “To rapidly identify new protein targets for therapeutic interventions for ARSACS disease, we will apply unbiased mass spectrometry-based proteomics and innovative computational approaches to globally uncover the cellular signaling pathways and kinases affected by deletion of the SACS”. Read more.

Join us   #tuesdaytakeoverday – March 30th

Join us #tuesdaytakeoverday – March 30th

Action for Ally will takeover Rare Revolution Magazine’s social media to create awareness about ARSACS and find a treatment. See you on #tuesdaytakeoverday, March 30th.