Dr. Jack Parent of the University of Michigan gave DSF invaluable advice and guidance in our early days. He also recognized and applauded our efforts, and his backing and support gave us credibility within the medical and research communities as the organization grew. He helped us identify researchers, create a patient registry, and organize our first Research Roundtable. Most importantly, he helped us to develop our Research Grant Program. That program has now awarded over $4.1M to 38 projects in a 10 year time span.

With our limited funds we needed to be strategic and innovative in our funding approach. While later-stage research is easier to find funding for, early-stage research funding is competitive and scarce. Pilot studies are important because they provide valuable insight for researchers and help increase the likelihood of success of future, larger studies built off of the pilot study. In order to get to large-scale funding from the National Institutes of Health (NIH), a researcher needs pilot data. By offering smaller pilot study grant awards, DSF was able to bridge the gap for early-stage research funding in the field of Dravet syndrome (DS).

Many of our community members do not have a good understanding of how a research grant program works. Below are some of the most common questions we receive, to help you better understand the process.

What is DSF’s Research Grant Program?
DSF’s Research Grant Program provides pilot study grants to academic scientists for translational or clinical studies related to Dravet syndrome. Our grant program has three arms. Details of each can be found at the links below:

How do pilot study grants help move the research field forward?
If you are a working researcher or are a young investigator getting ready to enter the field, a grant can be a great source of support. Knowing support is available may also guide a young investigator or researcher on where to place their research focus. By receiving enough funding to do their pilot study to collect data and prove their hypothesis allows the researcher an opportunity to seek a larger grant from a bigger funder.

This approach was validated through a project awarded in 2011 to Dr. Scott Baraban at the University of California, San Francisco. His project, Gene Profiling and High-Throughput Drug Screening in a Zebrafish Model of Dravet Syndrome, allowed him to collect enough project data to submit and be awarded a significant NIH grant award. In addition, his project identified existing compounds that could potentially be repurposed for use in treating DS.

How does DSF identify potential research grant applicants?
DSF promotes its research grant program at professional meetings, including the DSF Research Roundtable, as well as on our website, social media, and emails to our professional email list. Our Medical and Scientific Advisory Board also does a great job in promoting our program and alerting their colleagues of the grant opportunities we offer.

How does DSF decide which projects to fund?
If a potential applicant believes that their project meets the criteria of DSF Research Grant Program, they will develop and submit an application during our grant cycle. This process can take the applicant weeks to complete. The application includes everything from organizational information, an explanation of the proposed work, the investigator’s bio, and a proposed budget.

After the grant application is received by DSF, it is reviewed to confirm that it is compliant with our guidelines and is complete. If it passes this screening, it is forward to the Chair of our Review Committee. Our grant review process follows that of the National Institutes of Health (NIH), with our grant reviewers donating their time. The grant process is unbiased and awards are based solely on scientific merit, as determined by the review board. Our review board consists of DSF’s Scientific Advisory Board Members, as well as guest reviewers who are secured based on their expertise in a specific area. Once the review process is completed the scores are forwarded to DSF’s Board of Directors, who have the final vote on which grants will be awarded in that cycle.  

Does DSF tell researchers what they should study?
While we cannot tell researchers what their project should encompass, our annual grant program lays out the criteria for what types of research projects are of interest to DSF and which will be considered for funding.

Also, for the first time in Spring 2019, DSF offered a special cycle outside of our regular grant cycle specifically for proposals that included a collaborative effort to modify disease onset and/or progression using a genetic strategy, to encourage research in this area.

What happens after applications have been reviewed and approved?
All applicants are notified as to whether or not they have received a grant award. DSF then begins to work with the award recipient to finalize the legal contract for the funding agreement. Following this, the applicant will receive their first disbursement and may begin their project. Subsequent disbursements are made when the applicant meets the milestones and/or reporting requirements that were outlined in their funding agreement.  

What happens when the project is complete?
When the project is completed, the researcher submits a final report to DSF. If the project results are promising, the researcher may choose to seek funding for a larger scale study. They may also submit a paper on their project results for publication in a peer-reviewed journal. DSF’s grant awardees are also invited to present their findings at our annual Research Roundtable.