CMT Awareness Month ramps up fundraising efforts

The nonprofit Charcot-Marie-Tooth Association works to raise awareness of the disease, support patients, and find a treatment and a cure.

Client: Charcot-Marie-Tooth Association (Glenolden, PA)
Agency: GatesmanMarmion+Dave (Pittsburgh, PA)
Campaign: CMT Awareness Month
Duration: January - September 30, 2011
Budget: $60,000

Charcot-Marie-Tooth (CMT) is an inherited neuropathy disease that gradually causes loss of normal use of the extremities. The nonprofit Charcot-Marie-Tooth Association (CMTA) works to raise awareness of the disease, support patients, and find a treatment and a cure.

Based on the success of a 2010 CMT Awareness Week campaign, CMTA and AOR GatesmanMarmion+Dave launched a CMT Awareness Month campaign last September.

“We believe there are about 150,000 people – conservatively – in the US with CMT,” explains Pat Livney, CEO of CMTA. “We need to find these people and get them involved.”

“We activated members of CMTA to influence the general public,” says Shannon Baker, partner at GatesmanMarmion+Dave.

Fifty existing support and action group facilitators hosted grassroots events and fundraisers and talked to media.

Providing online opportunities for patients and family members to connect, share stories, and learn new information was a priority.

Contests, PSAs, and media relations also helped raise awareness.

A call for nominations of extraordinary adults and children living with CMT was posted to Facebook and on March 14. Entries were collected by action group facilitators and via email. Winners were announced September 5 and 19 on Facebook and in local markets.

During September, content and events focused on weekly themes, including advocacy and education.

Events hosted by facilitators included school presentations and craft sales.

Media kits with educational materials were distributed to facilitators and dailies in their markets.

More than 80 videos of patients and their friends and family members discussing experiences with CMT, addressing questions, and offering advice were posted to (created in 2010). The team created most of them, but site users also uploaded some.

An additional 14 videos, including research updates given by MDs, were posted to YouTube.

Throughout September, Twitter Q&A sessions were hosted; content was posted to Facebook, including polls and open-ended questions; and PSAs ran on radio and online channels.

Livney reports $50,000 was raised in September. “We've gone from zero 24 months ago to north of $250,000 [total],” he adds. visits topped 7,500 total (with visitors from 80 countries) in August and September, a 2,000% increase over June and July.

Nearly 231,000 impressions were garnered on Facebook, Twitter, and YouTube combined. Facebook likes increased from 1,289 to 1,745 ending September.

About 24 stories ran in outlets such as Chicago Sun Times and The Tampa Tribune.

Plans include getting September officially proclaimed “National CMT Awareness Month.”

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