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September 2010

Clinical Trials Veterans Reach Out

Clinical Trials Veterans Reach Out - September 2010 - Connections - Cystic Fibrosis Foundation
CF Clinical Trial Ambassadors Pam
and Lou Mertz and their sons Adam
and Dylan (10), who has CF, enjoy
their time outdoors.

Since their son, Dylan, was diagnosed with cystic fibrosis 10 years ago, Pam and Lou Mertz of St. Michael, Minn., have been passionate volunteers, raising funds to support the Foundation’s mission to cure and control CF.

While the Mertzes were thrilled about progress in CF research — a sign that their hard work was paying off — they recently learned that clinical opportunities for testing new treatments for CF were beginning to outnumber the patients volunteering to participate in trials.

“As fundraisers, we often say, ‘Money buys science, and science saves lives,’ but this is only half-true,” said Pam. “Unless patients participate in clinical trials, the drugs and therapies that we have worked so hard to fund and develop will never make it to the market.”

Clinical Trials Ambassadors Lead the Way

Unwilling to let any research stall, Pam and Lou joined the Foundation’s Clinical Trials Initiative to help boost clinical trials participation in the CF community. Drawing on the peer-to-peer recruitment techniques they used as volunteer leaders, the Mertzes agreed that peer-to-peer connections could work to increase clinical trial participation as well.

The Mertzes are now participating in the pilot of the CF Foundation’s new Clinical Trials Ambassador Program.

Clinical Trials Ambassadors are parents and people with CF that partner with their research team to share their personal stories and help educate others about clinical trials. Their goal is to encourage others in their local CF community to learn, ask and consider joining clinical trials.

As Clinical Trials Ambassadors, the Mertzes speak at their care center’s CF education days and with other families at their local chapter about their experiences with clinical trials: “We, too, have had fears and questions about Dylan participating in clinical trials. But we also know that we can’t let ourselves be deterred. There isn’t ‘someone else’ to do this for us,” the Mertzes emphasized. “Because we have been around the clinical trial block, so to speak, we hope other families can benefit from our experience.”

A Network of Support

Although this program is still in the pilot phase, connections are already being made through family education days at local CF Foundation-accredited care centers, at Great Strides and other events.

Families that are new to clinical trials can learn from the real-life experiences of others who have participated. “People respond best to personal contacts — someone who has been in your shoes. We hope by helping patients and families share their common experiences, we can take some of the mystery out of clinical trials and boost participation,” Pam explains.

Are you a clinical trial veteran who is willing to share your experiences with others? Are you considering clinical trial participation, but would love to hear from those who have “been there?” Contact your local CF Foundation-accredited care center to learn more about how you can get involved.

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