CMTA strengthens its role as the leading force in comprehensive CMT research, forging a strategic alliance with the Inherited Neuropathy Consortium
The Charcot-Marie-Tooth Association (CMTA), the largest philanthropic funder of Charcot-Marie-Tooth disease (CMT) research aimed at bringing treatments to patients, today announced a landmark alliance with the Inherited Neuropathy Consortium (INC). With a $1.2 million annual funding commitment, this partnership positions CMTA as the partner of choice for CMT research and for pharmaceutical companies involved in drug development and clinical trials.
CMTA and INC are accelerating progress from the lab to the clinic, advancing trials and treatments that offer hope to the CMT community.
This strategic alliance strengthens CMTA’s longstanding support for INC, rooted in a shared dedication to advancing CMT research on the path to a cure. With NIH funding for INC concluding in 2024 after 15 years by an NIH rule, CMTA’s investment will support biomarkers, clinical outcomes, natural history studies, and other critical tools for clinical trial readiness. This funding also enables genetic testing, new gene discovery, and the training of future CMT researchers, creating tools that pharmaceutical partners rely on to bring innovative medicines to market.
A Commitment to Every Person with CMT
CMTA’s mission is to improve the lives of all those affected by CMT. By uniting the patient community, researchers, clinicians, and drug developers, the CMTA-INC alliance accelerates progress toward effective treatments. CMTA CEO Sue Bruhn, PhD, noted: “Sustaining INC’s work through the new CMTA-INC strategic alliance means we can address the needs of every individual affected by CMT, regardless of type. This transformational partnership represents a new chapter for the CMT community, offering real help today and genuine hope for tomorrow. We are proud to play this role in shaping a new era of CMT research.”
Michael Shy, MD, principal investigator (PI) of INC and a pre-eminent leader in the CMT clinical research space, shared his vision: “INC’s journey has always been about empowering patients through research and clinical innovation. This new alliance provides our work with a sustainable path forward, ensuring that each of our over 20 international centers can continue the vital research that brings us closer to transformative treatments and a world without CMT. This partnership bridges an essential funding gap and opens new collaboration and scientific discovery opportunities. Together, we’re building a future that changes the trajectory of CMT research and patient care.”
A New Era for CMT Research
The CMTA-INC strategic alliance sets a bold precedent in CMT research, drug development, and patient care. Gilles Bouchard, Chairman of the Board of Directors for CMTA, emphasized, “Thanks to CMTA’s Strategy To Accelerate Research (STAR) investments over the past decade, 100% funded by the CMT community, we now have a rich ecosystem and pipeline in CMT research, and we are starting to see promising clinical trials emerging. The CMTA-INC alliance is setting the stage for the next phase of STAR, where we engage with pharmaceutical partners in clinical trial design to support testing potential treatments with patients. This is truly an exciting time.”
About the Inherited Neuropathy Consortium (INC)
INC is a collaborative network of CMT investigators from multiple academic medical centers who currently follow over 8,300 individuals with CMT. Since its inception in 2009, INC has published over 300 manuscripts defining the natural history of multiple CMT subtypes and developing the clinical outcome measures and biomarkers that allow investigators to perform these natural history studies and make the subtypes “Clinical Trial Ready.” INC has identified thirty new genes that cause CMT to date and trained more than twenty outstanding young investigators devoting their careers to CMT research.
Published on: November 12, 2024
Special Q&A Opportunity with Dr. Michael Shy
Please register and join us on Wednesday, December 4th at 12:00 p.m. Eastern Time for our 4th Quarter Lunch & Learn – a Fireside Chat with CMTA’s Dr. Sue Bruhn and Dr. Katherine Forsey, and INC’s Dr. Michael Shy. Dr. Shy will be providing an exciting update on how CMTA’s partnership with the Inherited Neuropathy Consortium (INC) will play a key role in the future of drug development.