During the Holiday Season There Are Many Things We Are Thankful For.

At the DMRF we are happy that our work gives hope to people who suffer from dystonia.

By Janet Hieshetter, Executive Director, Dystonia Medical Research Foundation

Now that we are into the “official” holiday season it means the end of 2024 is in sight. This year there are so many things that we here at the DMRF are thankful for and I am happy to share a few of them.

People. The DMRF is about people, those living with dystonia and the many people who are working on behalf of those who suffer from dystonia. Our researchers are tirelessly working towards finding a cure and without their focus and dedication we wouldn’t have some of the breakthroughs that have happened over the past 50 years. Add to that our various support leaders who work so hard to ensure that their members have all the information they need to make decisions about their dystonia care and in doing so send a strong message that no one needs to go through dystonia alone.

And then there are our awareness warriors, our advocates and our caregivers; each of these people play an integral role in helping to raise awareness of what dystonia is and how it changes lives.

We are grateful for our dedicated Board of Directors Community Leadership Council Members. These volunteers have a holistic view to dystonia medical research and keep all the disparate parts moving in a unified direction of one day discovering a cure. They are “all in” and work so hard in support of the DMRF’s mission. Finally, a huge thank you to our donors and sponsors. Simply put, we could not do what we do without your support, and we thank you for that and the confidence you have in the DMRF.

Now I’d like to expand a bit on Research. Research is key to our achieving our promise to those affected by dystonia – to one day close our doors because there is no longer a need for all the DMRF does.

We are grateful how our researchers are advancing our understanding of dystonia and we’re proud to have awarded for four new grants and two new research fellowships (and support for an additional clinical fellowship) earlier this year. In total, the DMRF supported 11 grants and two physician/scientists in 2024. If you haven’t already, click here to watch the videos where these newly funded researchers discuss their projects and explain their hypotheses.

In addition to supporting these grants, the DMRF is grateful to the researchers who participated in the Pathogenesis of Dystonia Workshop held in October. This scientific workshop brought together investigators from around the world to challenge current thinking, recommend new areas of potential investigation and form new alliances. Discovering a cure warrants a global effort and the DMRF is dedicated to bringing together thought leaders eager to collaborate in this fight.

Programs. Besides the grants provided by the DMRF, we are also advocates for other avenues of research funding. A prime example of this is the annual Department of Defense (DoD) appropriations bill that includes conditions that are deemed “eligible for study” via the Peer-Reviewed Medical Research Program (PRMRP).

This collaborative effort is ensuring that dystonia remains eligible and that dystonia researchers can compete for $360 million in federal research funding (2024).

Our programs of education and community outreach are critical. Addressing the needs of the community for more accurate and balanced information is what we do. Responding to thousands of requests for information, sending our magazine to 55,000 people to keep them connected and offering the opportunity to come together at events and meet others with dystonia can make all the difference for someone newly diagnosed.

There are a lot of things that we at the DMRF are thankful for. People, Research and Programs are just scratching the surface of what we are working on and how your contributions to the DMRF truly make a difference in the lives of dystonia patients.

Thank you for your continued support and know that going into 2025 our efforts to find a cure for dystonia remain steadfast.

About the author:
Janet Hieshetter is the Executive Director of the Dystonia Medical Research Foundation and has led the organization since 2004. She has spent her career running and directing non-profits in various causes. Janet lives in Chicago with her husband, an attorney, and her two dogs, Carter and Rosa. She also has two adult children who have followed her lead in non-profit advocacy.