After nearly 10 years as an organization, FMD Chat officially ceased operations on May, 18, 2022 by unanimous board approval.
The organization had unofficially discontinued in 2017 when founder and President Sarah Kucharski was forced to step back from patient advocacy due to personal health matters. Although Kucharski hoped to perhaps one day return to her advocacy and leadership roles, she suffered a severe stroke during surgery to repair a brain aneurysm in March 2019.
"It' has now been just more than three years since my stroke, and unfortunately my recovery is not such that I can be an effective leader for FMD Chat,” Kucharski said., my recovery period has coincided with Covid, which has shown us just how abruptly and dramatically the world can change for so many. FMD Chat is fortunate that we still have the people necessary to bring the organization to a formal end, but it would be irresponsible for me to further delay taking the appropriate steps to wrap up business. "
As a final order of business and In accordance with organizational bylaws, board members voted unanimously to allocate FMD Chat's remaining funds to support FMD research. Given that Dr Santi Ganesh, David J. Pinsky Endowed Professor of Cardiovascular Medicine and Associate Professor, Department of Internal Medicine in the Department of Human Genetics at University of Michigan, published the first clinically actionable findings pertaining to fibromuscular Dysplasia, Funds are being contributed to Dr Ganesh via the University of Michigan’s Frankle Cardiovascular Center Research Fund (309433).
Board members then unanimously voted to dissolve FMD Chat as a nonprofit corporation file and Articles of Dissolution with the NC secretary of state,
“In all honesty I probably never should have turned FMD Chat into a nonprofit organization, what first drew me to the idea of creating a support group for patients and caregivers were the people and the connections people made with one another,” Kucharski said. “Having a rare disease can be incredibly lonely. I know of a few friendships that started in our Facebook group 10 years ago that remain strong today. When I had to step back in 2017, thankfully some of my fellow FMD patients stepped in to become administrators and moderators of our private group on Facebook— Dani, Kaitlyn, Chris, Carol, Elizabeth, Amy and Chris. Without them there to pick up and carry the mantle, that community would have been lost. I am forever thankful for all the people I met along the way and the opportunities I had to bring some attention to fibromuscular dysplasia. People need People— FMD patients need you.
Although FMD Chat is no longer an official organization. You can still find patient to patient support:
at Rare Connect
And on Smart Patients