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Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures.
In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the secrets of the many diseases covered in our program and work toward finding treatments and cures to slow and stop them.
Over the years, we’ve fielded many questions about our research program, including how awards are determined, why there are some diseases that seem to receive more research dollars than others, and why there seems to have been so little progress despite the enormous investment. Here are some of the most frequent questions we receive. Do you have others you are curious about? Let us know in the comments.
To whom does MDA award grants?
MDA supports the world’s best scientists who are working on projects that will make an impact across the boundaries of the diseases in our program. Although specific qualifications vary depending on the type of grant, MDA consistently funds the top scientists in the world who are leaders in the neuromuscular disease space.
What types of research does MDA support through its grants programs?
- Discovery research includes work to understand the causes of disease, pinpoint the biological pathways involved in disease, identify new drug targets and test new treatment strategies.
- MDA’s translational research program is designed to move new drug targets into the clinic as rapidly and efficiently as possible. The program was developed in response to the increasing number of promising therapeutic avenues for neuromuscular diseases that have developed from MDA’s discovery research program.
- Clinical research supports the continued development of exciting therapies in the pipeline moving into testing in humans. This includes clinical trials, where a new drug or other form of intervention is tested in healthy people (safety trials) or in patients (to see if the intervention alleviates symptoms), but also clinical studies in which researchers are studying the disease itself.
- Research to support infrastructure is designed to support the development of tools, techniques and services of need to the neuromuscular research community.
- MDA also awards grants to support conferences, meetings and workshops to facilitate the exchange of scientific ideas and crucial information relevant to the diseases under MDA’s umbrella.
Where is MDA research happening?
MDA funds neuromuscular disease research all around the world. MDA-supported research projects currently are being conducted in 10 countries.
When does MDA award grants?
Different types of MDA grants may be awarded at different times of the year. Some, including research grants and development grants, are awarded on a regular basis in the winter (February) and summer (August). Other “out of cycle” awards may be made at any time.
Why does MDA award grants?
Finding treatments and cures is at the heart of MDA’s mission to free individuals — and the families who love them — from the harmful effects of muscular dystrophy, ALS and related diseases. In addition to the work MDA does to provide the best clinical care and support to families living with neuromuscular disease, funding the most promising and innovative research is the top priority.
How does MDA decide which grants to fund?
The review process varies depending on the type of grant. For research grants, which make up the majority of MDA’s research funding awards each year, investigators submit grant applications, which are reviewed and rated by MDA’s Research Advisory Committee — a group of approximately 40 of the world’s leading scientists and clinicians who specialize in neuromuscular disease and who serve in volunteer roles for MDA. Grants with the best scores — representing the best and most promising science — are recommended for funding. Approval comes from MDA’s Board of Directors.
How many diseases do MDA grants cover?
The number of diseases that are the focus of MDA-supported research varies by grant cycle, but many of the research projects we fund have application across the broad spectrum of diseases we cover. MDA is committed to making treatment options available for all the diseases in our program; One of the advantages of being an umbrella organization is the power in the big-picture approach we’re able to take toward finding the medical and scientific breakthroughs that will lead to treatments and cures.
Why aren’t you funding research for my disease?
MDA-funded research makes an impact across disease boundaries, so although a particular research project may focus on a disease, or group of diseases, the work may have implications that ripple across the neuromuscular disease landscape — this is why MDA’s broad coverage of diseases is so powerful.
When you fund research in one disease, aren’t you taking away funding from research into another disease?
MDA research dollars aren’t allotted to particular diseases, so funding to support research in one disease area doesn’t “take away” from any other. MDA simply funds the best scientists and the best science out there as we work to find treatments and cures for all the diseases in our program.
Why haven’t we found a cure yet?
There are many neuromuscular diseases, and for some diseases there are even different types. Because there are so many, we will have to find many cures— not just one. We’re going to have to treat the different diseases and disease types in many different ways. We can always use more funding to speed the search for cures, as it will allow us to fund more people to work on the various problems. But funding isn’t everything. We also are limited by the speed at which science advances and how our knowledge about the different diseases moves forward.
Why isn’t there more research going into my disease?
In order for research to be conducted for a specific disease, there must be funding available and there must be researchers who are interested in working in the disease area. Both can be positively affected through greater public awareness. MDA is working to raise awareness, attract researchers and accelerate treatments and cures for all the diseases in its program.
How can we encourage more researchers to devote themselves to the study of my disease?
MDA encourages bright, young investigators to pursue careers in the neuromuscular disease research field through grants that are specifically tailored to help launch these young researchers’ scientific programs. As their science advances, many recipients of these development grants apply for and receive research support through MDA’s research grant program. Many have also become members of MDA’s Research Advisory Committee.
What successes have come from the MDA research program?
MDA has been involved in research into basic muscle and nerve biology since 1950, when virtually nothing was known about how muscles were formed or functioned, even in non-diseased tissues. Since then, thousands of scientific papers have been published explaining how the tissues work and what goes wrong in neuromuscular disease. MDA funding supported the research that led to the discovery of the genetic causes of dozens of diseases, starting with the discovery of the dystrophin gene in 1986. Without this knowledge, there was no hope for curing diseases.
MDA’s research program has been so successful over the years that MDA started the translational research program in 2004 to help accelerate therapy development based on these results. This program attracted so much interest that it was expanded in 2009 by the formation of MDA Venture Philanthropy (MVP), which operates with a more venture capital-like approach. MVP is exclusively focused on the funding and commercialization of treatments and cures for neuromuscular diseases, and hopes to increase the speed of moving drugs through clinical development.
MDA’s fingerprints are on nearly every major advance in neuromuscular disease research, with MDA-sponsored research having resulted in breakthroughs for treating diseases, and in increasing survival and quality of life.
If MDA did not sponsor this research, what would the state of science be?
MDA provides critical funding at a time when many other sources of funding have dried up or become more difficult to obtain. We fund not only the best science and the world’s best researchers, but also the most promising emerging investigators who will make the breakthroughs of tomorrow. MDA funding has kept both the drug development and researcher pipelines moving. Without it, many of the promising therapies in development today may never have gotten off the ground.
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What is limb-girdle muscular dystrophy?
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about 
Muscular dystrophy couldn’t keep Paul Robertson from the water, and he doesn’t want muscle disease to stop anyone from doing what they love.
The FFMD team came in sixth out of 31 boats during the competition (a very respectable showing for a maiden voyage) and netted an award for getting the last bite one day. In addition, the group staffed a tent, organized a raffle and sold swag, all to help raise funds and awareness for the MDA.
“It’s priceless. You can’t put a value on doing that,” he said. “Sitting in a restaurant one night, someone walks up and says, ‘Hey, where can I get one of those shirts? My cousin’s daughter has muscular dystrophy.’ That’s just like, wow.”
