Fran at the 2023 Freedom to Move event in Vancouver, BC.
We are deeply saddened to announce the death of Frances Belzberg, co-founder and Honorary Chair of the Dystonia Medical Research Foundation (DMRF) Canada.
Fran and her husband, Sam, established the DMRF in 1976 after their daughter, Cheri, was diagnosed with dystonia. At a time when little was known about the disorder and few resources were available, they created an organization dedicated to advancing research, providing information and support, and raising awareness for individuals and families affected by dystonia.
They immediately recognized the importance of engaging dystonia experts to join with the DMRF to work on developing treatments and ultimately a cure. They worked tirelessly to engage researchers, with a focus on young investigators, to the field and ignited the global dystonia research effort. Fran and Sam pioneered the practice of having open meetings with scientific advisors reviewing grant applications and having scientific discussions with the lay leadership present. This practice was novel at the time and allowed members of the Foundation’s Board of Directors to better understand the process and challenges of dystonia research.
Fran also understood the importance of providing accurate information so people could learn as much as possible about dystonia and the critical role support had for those living with dystonia. She participated in support groups in Canada and in the United States and would often volunteer to speak with other mothers whose children had dystonia.
Following Sam’s death in 2018, the International Dystonia Symposia was named for him. Fran remained deeply engaged in the Foundation’s mission, and gave the welcoming remarks at the first symposium held after his death, traveling to Dublin for the Samuel Belzberg International Dystonia Symposium in June 2023. In her remarks she said, “I want to thank each and every one of you for your efforts to ease the burden of dystonia and your search for a cure… but I also want to remind you that people are waiting. People like my daughter who was diagnosed so many years ago and people who have just been diagnosed… all waiting for scientific breakthroughs, for answers. No pressure, but we’re counting on you!”
The extraordinary contributions of Fran were recognized through her appointment as a Member of the Order of Canada in 1995. She was later appointed to the Order of British Columbia in 2021, the province’s highest form of recognition.
Fran worked relentlessly to promote the work of the DMRF and DMRF Canada and inspired so many to join this fight. She leaves a lasting legacy. It is with gratitude that we continue our work to achieve the mission she and Sam set out to do 50 years ago.
May her memory be a blessing.