There are multiple ways to get involved in the mesothelioma community. Some people are good at fundraising like our client Shelly Kozicki, who has fund-raised over $250,000 for the mesothelioma research grant named after her late husband Craig. Others regularly visit their legislators and advocate for awareness like mesothelioma survivor Bonnie Anderson, who played a key role in helping secure Mesothelioma Awareness Day at the federal level.
Another way to participate is to become a consumer advocate for cancer research. During the 2012 Meso Foundation Symposium, mesothelioma survivor Julie Gundlach invited other mesothelioma survivors and their families to get involved with the Congressionally Directed Medical Research Program.
The program was started by the U.S. Congress through the Department of Defense. Its goal is to fill research funding gaps by focusing on high-risk, high-gain research. What makes this program especially commendable is its emphasis on eradicating diseases that affect those who serve in the armed forces.
The program creates a unique partnership between medical experts, the public and the government. In the review process, cancer survivors – known as “consumer members” – are encouraged to participate and help other members of the review panel award approximately $15 million to programs available for grant funding.
Julie served as a consumer member earlier this year. During her presentation, she invited others to join her.
“They’re always looking for more people to participate,” she said. “My job as a consumer member is to focus on the strengths and weaknesses of the proposal from the patient’s perspective.”
She explained that mesothelioma patients who have experienced the challenges of surgery, radiation, chemotherapy and other procedures bring a unique perspective to the process.
“You can look at a grant request and tell if what they’re proposing is feasible or not based on what you went through,” she said.
She said one good part about her participation in the program is that she’s able to see right away that steps are being taken to fill research gaps and fund orphan diseases like mesothelioma.
“It’s really, really rewarding to know something is being done,” she said.
To be considered for the program, a person must have been diagnosed with mesothelioma or other disease, condition or injury associated with a funded program. Caregivers of such a person or their families also qualify for participation. In addition, they must be nominated by a community organization like the Mesothelioma Applied Research Foundation.
If anyone is interested in learning more or volunteering to become a consumer member, they can contact with the Meso Foundation at [email protected]