Yohan and his Parents are Committed to Curing CMT | Charcot-Marie-Tooth Association

Yohan and his Parents are Committed to Curing CMT

Originally called the Accelerated Research Collaboration, the Strategy to Accelerate Research was launched in 2008. In just 10 years, STAR has spent more than $8 million to finance dozens of research projects.

(Adapted from the CMTA Report – January 2008)

The genesis of STAR was in 2007 at the Second International CMT Consortium in Snowbird, Utah. Sponsored by the CMTA, the Consortium brought together researchers and clinicians from around the world. Together with the leadership of the CMTA, a group of these researchers agreed to embark upon a unique, cutting-edge approach: managing research according to sound business principles. STAR aimed to bring researchers out of their silos to collaborate with each other, holding them accountable to projects that focused on the known causes of CMT and required them to deliver results.

The Strategy to Accelerate Research also presented a huge fundraising challenge for the CMTA: $10 million would be needed to fund it. The first seed money came from a Pennsylvania couple, John and Joan Chernega, who made a $100,000 gift to the CMTA in honor of their son, Jim, who has CMT.

Gilles Bouchard, who is now chair of the CMTA Board of Directors, and his wife Elizabeth Ouellette, also a CMTA board member, also committed $500,000 to create “The Yohan CMT Research Fund,” a donor advised fund designed to support the critical research being conducted by STAR.

“Now is the time to create the financial foundation necessary to support these efforts,” Gilles explained. “Creating the fund was very easy, and Elizabeth and I urge others to follow our lead. Working together, we can make a difference.”

In addition to creating the fund in honor of their son, Yohan, who has CMT, Gilles and Elizabeth exemplify the commitment of CMTA board members who contribute their expertise to further the mission of the CMTA.

Now retired, Gilles spent the majority of his career as an executive at Hewlett Packard, after which he ran several companies in the San Francisco Bay Area, including Opnext and Livescribe. After his son Yohan was diagnosed with CMT, Gilles took a yearlong sabbatical to work closely as a volunteer with members of the CMTA Board of Directors to develop the business objectives and strategic direction for STAR.

Elizabeth, who has a master of arts in counseling psychology, developed a unique presentation to teach children and adults about the kinds of challenges facing those with CMT, and she has a decade-long history of helping organize and run CMT support groups—now CMTA branches—around the country.

Please join hands with Yohan and his parents to bring us one step closer to delivering treatments to the 2.8 million people who are living with this disease. Until December 31, 2018, your gift will be matched dollar-for-dollar up to $250,000. Donate today!

Yohan and his Parents are Committed to Curing CMT

Click the image above to hear Yohan’s story.

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