ATLANTA, Sept 1, 2023 — To mark CMT Action Month this September, the CMT Research Foundation (CMTRF) today launched a month-long lineup of events, bringing together artists, advocates, and the CMT community from across the U.S. The series of events aim to raise awareness and critical funds for Charcot-Marie-Tooth disease (CMT) research. With an estimated one in 2,500 individuals affected—the same prevalence as multiple sclerosis—the urgency for further research and treatment has never been greater.
Among the special events:
A Night at the Opry, Sept. 20: An evening with Nashville’s beloved ‘song stylist’ Linda Davis, who has a personal connection to CMT. Ms. Davis, will highlight advocacy and fundraising for CMT research during her appearance at the Grand Ole Opry.
“CMT is more than just a diagnosis; it’s a reality that affects the whole family, challenging them in ways many can’t imagine. Seeing its impact firsthand, I am more committed than ever to champion the cause,” says Ms. Davis. “In September, as we rally together, let’s shine a light on those affected by CMT and work tirelessly to fund promising research towards treatments and cures.”
Global CMT Research Convention, Sept. 22-23: Each year, CMTRF convenes a Global CMT Research Convention, bringing together the world’s leading experts in CMT research, biotech, and pharma, with CMT patients and their families in one event to discuss the dynamic changes in CMT research for treatments and a cure.
Turn Up the Volume! Auction & Raffle, through Sept. 30: In collaboration with Scientific American, fans and supporters are presented with a golden opportunity to bid on exclusive music items, including a Gibson Peter Frampton Autographed Les Paul Custom Guitar Package, an Alan Jackson Autographed Straw Stetson Hat, an Eric Church Heart & Soul box set, a Marriott Shoals Hotel & Spa Package, a recording session at the legendary FAME Recording Studios, and additional autographed items from Chris Stapleton, Carrie Underwood, Keith Urban, John Pardi, Gary Allen, Vince Gill and more. To magnify the impact of this initiative, every dollar raised from the auction will be matched up to $250,000, courtesy of a generous benefactor.
CMTRF is committed to fostering impactful conversations and cultivating meaningful donor partnerships. Through spotlight features, CMTRF aims to elevate awareness and inform the community about the most recent advancements in CMT research and advocacy.
The country music community has rallied behind the CMTRF, with notable contributions from Alan Jackson’s “Last Call: One More for the Road Tour,” generous donations from Chris and Morgane Stapleton’s charitable fund, “Outlaw State of Kind” and Country Music Television.
As CMT Action Month gears up, CMTRF invites everyone to join the events, contribute to the cause, and be a part of the change.
CMT Research Foundation (CMTRF) is a patient-led, non-profit focused on delivering treatments and cures for CMT. The foundation identifies significant obstacles or deficiencies impeding progress toward a cure and seeks out collaborators to address these issues. To date, CMTRF has funded 19 projects, of which 6 are completed. Of those 6 completed projects, 5 have clinical candidates. CMTRF’s mission to invest in promising science with high potential of leading to treatments and cures was proven effective and ground-breaking when DTx Pharma with a CMTRF-backed program as its lead candidate was acquired by Novartis for $1 billion. Founded by two patients who are driven to expedite drug delivery to people who live with CMT, the 501(c)(3) federal tax-exempt organization is supported by personal and corporate financial gifts.