CMTA Special Adviser Issues $500K Matching-donation Challenge to Boost CMT2 Research Efforts

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by Mary Chapman |

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A special advisor to the Charcot-Marie-Tooth Association’s (CMTA) board of directors says he will match donations dollar-for-dollar up to $500,000 to support the organization’s research strategy to fight the disease he has — CMT2.

Bruce Chizen was diagnosed in 2016, after decades of experiencing symptoms. However, his physician discouraged him from undergoing genetic testing because he couldn’t do anything about the results.

Unsatisfied, Chizen forged ahead with his quest for more disease information. The first place he turned to was CMTA’s website. Since then, he’s been grateful for the organization’s help — and encouraged by its efforts to find a cure — that he’s vowed to support it however he can.

His initial CMTA donation led to breakfast with his Silicon Valley neighbor and CMTA board chair, Gilles Bouchard. The meeting resulted in him taking on his current role.

A Brooklyn, New York native, Chizen graduated from Brooklyn College where he studied health sciences and planned to become a teacher. However, he learned that he had a head for business, and started out as a Mattel Toys salesman, and then became a Microsoft sales manager in the mid-’80s. That was followed by stints at Apple and then Adobe, where he worked for 14 years, seven as CEO.

With his extensive business and nonprofit experience, Chizen appreciates how CMTA is run, calling the organization “extremely focused and effective.”

“I’ve seen a lot of waste,” the semi-retiree states.

Chizen considers education and community services an essential part of the group’s mission, and wants to fortify them. He’s also encouraged by the success of the organization’s Strategy to Accelerate Research (STAR), which was created in 2008 with five elements: Assays (tests), animal models, stem cells, partners, and clinical trials. The goal is to find treatments to slow, stop, or reverse CMT progression.

“The path to a cure is possible and probable,” Chizen said.

Visit this site to double your donations to the organization. Contributions will go to implementing CMTA’s new Type 2 strategy, a multi-pronged approach that includes projects on gene therapy, small molecule therapies, axon degeneration pathways, mitofusin activity regulation, and human stem cell studies. The strategy is outlined in the fall issue of “The CMTA Report,” which focuses exclusively on CMT2 and includes patient profiles. It’s available to download here.

CMT2 is caused by genetic defects that disrupt the structure and function of axons of the peripheral nerves. It’s less common than CMT1 and accounts for about one-third of all dominant CMT cases.