We are catalyzing the pace of innovation to accelerate a cure for FSHD.
Our purpose is to Solve FSHD2 while further benefiting FSHD1. We will do this by removing barriers and accelerating drug development for FSHD.Main Content
We will solve FSHD2 and FSHD1 by accelerating the development of novel therapies that stop muscle degeneration, increase muscle strength and improve the quality of life for those living with FSHD. This will be achieved by awarding grants which fund the development of critical tools for drug development including (but not limited to) biomarkers, cell and preclinical model development, clinical outcome assessments, and clinical trial research networks that focus on FSHD.
Through further investments in biotech and biopharma companies working on small molecule, RNA, DNA, gene-editing and/or cell-based therapeutics, we will share in the risk of drug development to accelerate finding a cure for FSHD. We will catalyze collaborative approaches to the science of FSHD2 and FSHD1 and reward team-based problem solving through a major PRIZE for Solving FSHD.
What is FSHD?
Facioscapulohumeral muscular dystrophy (FSHD) is a type of muscular dystrophy in which there is progressive muscle degeneration and muscle weakness that lead to an inability to lift objects, groom oneself and walk.
Information on the causes, diagnostic tests and underlying biology of FSHD can be found on the MyFSHD website.
FSHD1 vs. FSHD2
FSHD1 is caused by the deletion of large segments of repeating units of DNA on chromosome 4 called D4Z4 units. Normally there are between 11 and >100 D4Z4 repeats; with FSHD1 there are 1-10 D4Z4 repeat units. This reduced number of D4Z4 repeat units leads to decreased DNA methylation, and increased expression of DUX4 protein.
FSHD2 is caused by mutations in other genes that also cause an increase in DUX4 expression, but in which the D4Z4 repeats are of normal length. Mutations in SMCHD1 (Structural Maintenance of Chromosomes Flexible Hinge Domain Containing 1) and DNMT3B (DNA Methyltransferase 3 Beta) lead to decreased DUX4 DNA methylation and increased DUX4 protein expression.
For understanding differences between FSHD1 and FSHD2, please see the scientific paper published by Johnson & Statland, 2019.
Who We’re Funding
We’re focused on funding research and clinical trials, partnering with academics and biotech companies. We fund bottlenecks and we fund what otherwise would not get funded after a rigorous assessment. Additional details on our annual goals, funding mechanisms and investments will be announced in January, 2022.
What can you do?
If you have FSHD1 or FSHD2 please consider joining the registry to stay informed about the latest advancements as we move towards solving FSHD: Canadian Neuromuscular Disease Registry (Canada) & National FSHD Registry (USA)
We’re looking for individuals who are interested in participating in clinical trials. More on these trials at the following link: FSHD Trials
Neil’s FSHD Story
My mother told me I had FSHD when I was in my 20s. She said I slept with my eyes partly open which was a “sure sign” that I had FSHD – just like her. But I ignored her. As far as I was concerned, I was perfectly normal. I could lift kids, play tennis, ski, hike and do all the things I wanted to do. But that changed as I got older. I was slowly getting weaker. By the time I was 50, I couldn’t climb ladders anymore. And I couldn’t run without the risk of tripping. So, I had myself tested for FSHD. My mother was right. I do have FSHD – and so do two of my three daughters. That’s when I decided to take FSHD seriously and do something about it.
I started by attending an FSHD conference in Las Vegas in 2010. It was at this conference that I realized that research into a cure for FSHD had reached some exciting milestones, but more heavy lifting was required to finish the job. And, clearly, to get the job done faster, a lot more money was needed. I decided that the best way I could fight FSHD would be to help fund the required research. That’s when the concept of the FSHD Canada Foundation was created. It would be an organization dedicated to making a cure for FSHD happen as soon as possible.
A lot has happened since then. The definitive genetic model for the disease has been discovered. This is critically important since it makes sure that the research is properly targeted. And researchers have now developed several promising therapies that have been successfully tested in the lab on mice. This is still a long way from having a cure for people, but it’s very exciting times in FSHD research.
On a personal level, I consider myself to be very lucky. I am 68 years old and I’m still mobile. But my mother was mobile at my age too, and she was in a wheelchair when she was 75. So, I am “all-in” towards finding a cure. And not just for me. Also, for my brother and my daughters, and all the other people with FSHD. We all want to stop it from getting worse, and hopefully, find a way to get our muscles back too.
I’m an engineer. I love to fix things (and I usually can). But I can’t fix FSHD on my own. It’s going to take a big final push, with the right mix of passion, purpose, and people to make it happen. That is what Solve FSHD is all about and I’m proud to be part of it.
Chip’s FSHD Story
I am one of the lucky ones. My muscular dystrophy has been slow moving. Three years after doing the Ironman in Hawaii I noticed my swimming power had decreased dramatically. I passed this off to not training and maybe a bit of ageing. My back had been hurting so I went to a neurologist who took one look at me and said he wanted to test me for muscular dystrophy.
The doctor said my body was extremely disproportionate with a slim upper body and huge legs. He said I had a sway back that was indicative of Facioscapulohumeral Muscular Dystrophy, or FSHD 2. The neurologist said a sway back was the probable reason for nerves pinching in the small of my back.
Other than a sore back, I felt like an amazingly healthy, well-built athlete. I ignored the diagnosis as I believed I was invincible. I ignored the idea that I would get old. I went on to play B level squash and continued to be a 10 k runner. I was forced to quit squash at the age of 52 because I couldn’t raise my racquet over my head. I began a life of climbing mountains as my legs were very strong and doing what I was good at was a boost to my ego. I had stopped doing weights because I didn’t want to break down muscle, I sensed I could not grow back.
In 2013 I financed a meeting of all scientists researching FSHD in the Netherlands but was unable to attend myself. I was keen on a solution for the disease, but I was still of the thought that I was immune to long-term disability. After the conference, I went back to my busy business and family life and ignored the inevitable.
In 2018 I was asked to be on the board of a private company managed by directors with FSHD or with relatives that were diagnosed with FSHD. A few of them were quadriplegics in wheelchairs. As diligent as the scientists and directors have been at Facio, we have been unable to get a molecule ready for clinical trials.
As of 2021 I am 66 years old and many of my muscles have turned to fibrous tissue and fat. My upper body is very wasted, and as of two years ago, two key muscles in my legs turned to fat. I can walk but I must be very intentional and present, or I will trip and fall. If I extrapolate to 2030, I will be unable to walk on my own.
I am not a complainer and I refuse to take my condition lying down. I know there is no performance in life without action. The action I have taken is to commit a great amount of my wealth to eliminating bottlenecks in science. I want to provide speed to a cure, or solve muscle regeneration. My personal motivation will spill over to the many others with Muscular Dystrophy. Thanks for coming along on my journey to live forever or to die trying.
SOLVE FSHD Supports the FSHD Canada Foundation in Funding of US$1.2M in Multidisciplinary Biomarker GrantsLearn More
Solve FSHD Announces Appointment of Executive Director Dr. Eva Chin and Venture-Philanthropic Funding StructureLearn More
Eva R. Chin
Eva is a Canadian-trained scientist who has had an international career pursuing her curiosity to understand the defects of skeletal muscle in various diseases and now is passionate about finding effective therapies to treat rare neuromuscular diseases.
As the inaugural Executive Director for Solve FSHD, Eva will apply that passion and her insight into muscle biology and drug discovery and development to tackle the barriers and accelerate a cure for FSHD. Together with the relentless drive and support of Chip Wilson and Neil Camarta, this team will Solve FSHD!
Eva obtained her Ph.D. in Physiology from the University of Waterloo in Canada and completed post-doctoral training at the University of Sydney, Australia and UT Southwestern Medical Center in Dallas, focusing on the role of intracellular calcium in muscle fatigue, transcriptional regulation of muscle fiber type determination and muscle plasticity.
Eva’s career has spanned the academic and pharmaceutical industries, with previous positions at Pfizer, the University of Maryland, MyoTherapeutics, Cytokinetics and NMD Pharma. While at Pfizer Eva shifted her career from academic research focusing on cellular and molecular mechanisms of muscle function to the discovery and development of muscle-targeted therapies. Her career has increasingly focused on targeting the underlying skeletal muscle pathologies in rare neuromuscular diseases, including muscular dystrophy, amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA). Eva has also been a team leader in late-stage drug discovery to early phase clinical development programs across a span of therapeutic areas including neuromuscular and cardiovascular diseases, obesity, diabetes and osteoporosis. Over the past five years she has led the nonclinical development of numerous drug candidates in clinical trials for ALS, SMA, myasthenia gravis and hypertrophic cardiomyopathy. Eva has led or contributed to ten programs moving from a novel research idea to first in human clinical trials, focusing on translational pharmacology and safety to support IND and CTA filings. Ten of these molecules have safely been tested in Phase 1 and four have reached Phase 2 proof of concept milestones. Eva has over 50 peer-reviewed publications and more than 100 conference abstracts and presentations focusing on skeletal muscle fatigue and disease mechanisms for metabolic disease, aging and neuromuscular diseases.
Chip Wilson is a serial entrepreneur, philanthropist, devoted husband and dedicated father to five sons. His vision is to create possibilities for people to live longer, healthier, more fun lives, and to elevate the world from mediocrity to greatness.
His career in the apparel industry began in 1979 as Founder & CEO of Westbeach Snowboarding Ltd. After selling Westbeach in 1997, he founded lululemon athletica inc. in 1998, creating an entirely new category of technical apparel called “athleisure” - now a $400 billion global industry.
Through his family office, Chip focuses his interests on apparel, real estate, private equity, passive investments and philanthropy through the Wilson 5 Foundation. Chip and his wife Summer’s passion for design led to the creation of the internationally recognized KPU Wilson School of Design in 2018.
The 2021 edition of his business memoir, “The Story of lululemon by Founder Chip Wilson” was released in spring 2021.
In 2019, the Wilsons partnered with Anta Sports to buy Amer Sports, which includes brands such as Arc’teryx, Salomon, and Wilson Sporting Goods. Chip currently sits on Amer’s board of directors.
Chip is steadfast in his pursuit to cure Facioscapulohumeral Muscular Dystrophy. He is on the board of Facio Therapies and has begun his latest big 2021 project, Solve FSHD, to find a cure for FSHD by 2027.
To know more about Chip Wilson go to www.chipwilson.com
Neil is a chemical engineer and a member of the Canadian Academy of Engineering.
Neil joined Shell Canada Ltd in 1975 and led the development and delivery of world-class energy projects in Canada and abroad. Neil retired from Shell in 2005 and joined Petro-Canada as Senior Vice President Oil Sands. Following the merger with Suncor in 2009, Neil took over the position of Executive Vice-President, Natural Gas for Suncor Energy Inc.
Neil is currently a director of Western Hydrogen and Enlighten Innovations, two cleantech start-ups he founded which are focused on commercializing green fuel technologies and grid-scale battery systems. He previously served on the boards of Mindfuel, Enmax and the Alberta Shock Trauma Air Rescue Society (STARS).
Neil is dedicated to finding a cure for FSHD, a rare form of muscular dystrophy which afflicts Neil and his family. He co-founded the FSHD Canada Foundation and is the chairman of FACIO Therapies, a biotech company working on a cure for FSHD.