$2 million allocated for 15 projects
by Jamshid Arjomand, PhD, FSHD Society
Following a lull imposed by the global pandemic, the FSHD Society’s support for research grants has come back with a roar, as 15 projects received more than $2 million in funding in 2021, the most ever allocated in a calendar year in the history of the Society.
The Society, through the generosity of our donors, has been funding groundbreaking research for more than 30 years. The research grants, also know as investigator-initiated research proposals, are drafted by dedicated researchers in the field of FSHD and span the entire drug development pipelines, from basic or discovery research through clinical outcome measures. In recent years, the Society has allocated approximately one million dollars in research funding annually, which are distributed over two grant cycles per year.
Unfortunately, with the spread of the global COVID-19 pandemic, all research institutions began shutting down by April of 2020 and research, like so many other activities, was put on hiatus. Due to the uncertainty with the pandemic and the ability of researchers to resume their critical work, the Society opted to postpone the grant cycle for 2020 to determine if the reserve funds should be used instead to support existing researchers and their projects. Fortunately, most government funded research institutions were able to meet these unprecedented challenges by providing salary support to their staff, and as new safety regulations emerged later that year, researchers were able to slowly resume their work.
As one can imagine, a pause in funding or prolonged delays in research can effectively slow down the momentum in any field, leaving budding researchers to look for other opportunities and possibly even abandon FSHD research altogether. Instead, FSHD scientists seized on this opportunity and used the lockdown to draft new ideas for experiments that could move the field forward.
In late Fall of 2020, the FSHD Society reopened the grant portal and received a record-breaking number of applications, a total of 23 grant applications—the most in the Society’s history—were submitted, of which a record 10 proposals were deemed to have significant impact by the SAB and recommended for funding. With a surplus in available funding from the postponed cycle, all ten proposals, totaling $1,315,000, were funded, shattering any previous annual funding year in just one cycle.
The Society has just completed the review of the second round of funding for 2021 which included 17 new proposals, of which 5 proposals totaling $712,000 are being recommended for funding.
In total, the FSHD Society is committing over $2 million to support groundbreaking research for 2021. This infusion of funding should help boost any perceived loss of momentum the field may have experienced.
We hope a situation as dire as the COVID pandemic never repeats itself and are thankful to all of the researchers and for the community’s generous support that provided the exceptional resources to boost research activities in 2021. As we look forward to the scientific results of these studies, we remain committed to continue funding important research in the years to come and thank you in advance for your sustained support to help realize this commitment.
For more information, see Grants We Have Funded.
Have there been any treatments developed as a result of all this research? I don’t think things should be called groundbreaking unless you break ground. Since far more profit is made from a disease than from curing a disease, medical research will never cure FSHD because doing so would put them out of a job. They will keep collecting money and talking about breaking ground but the fact is if a big pharma company wanted to cure diseases they would not be in business. You know if you light the way to a cure, they will block the way to a cure. If medicine is advancing why hasn’t a single disease been cured since polio? The FSHD Society has never taught me anything nor has it done anything. Your purpose is to make people think something is being done so nothing will ever be done.
We hear and empathize with your frustration, but things are much more hopeful than you portray. Ten years ago, the only clinical trials for FSHD were for drugs and supplements that investigators hoped might mitigate some of the symptoms. But in 2010, research initiated and supported by the FSHD Society decades earlier led to the discovery of the genetic mechanism and role of DUX4 as the root cause of the disease. As a result, today there are a dozen therapies in various stages of development that are aimed at the cause of the disease. They promise to not merely mitigate, but to stop or slow the progression of symptoms. The first of these to advance through a Phase 2 trial showed improvement in several clinical measures. While we understand the cynicism about the pharma industry, the companies we’ve seen working on FSHD are certainly not toiling 24/7 with the expectation that their drug will fail. The founders and investors are not going to get a payout unless their candidate drug gets approved. And yes, many diseases that were once death sentences can be effectively treated. Leaving aside the diseases that have been eradicated or dramatically reduced thanks to vaccines, one can point to many successes of modern biomedical research: diabetes, many childhood cancers, cystic fibrosis, spinal muscular atrophy, to name a few.
Deb Baskervvilke says
My son is 36 he was diagnosed at 15! Nobody has ever done one thing for him. It hard to want to help raise funds when for 20 years there has been nothing offered to him
Hi Deb, we’re sorry to hear about your son. While we work toward a treatment, there is much that we have been doing to support everyone living with FSHD. This includes education and resources about exercise, nutrition, notifications about participating in clinical trials. But to benefit from these efforts, you and your son need to be able to notified. We see that you are not signed up to get our emails and we don’t have contact information on your son. We strongly encourage you to both join our Research Contact Registry: https://www.fshdsociety.org/for-patients-families/join-fshd-research-contact-registry/
John Cook says
Thanks for sharing.