Our vision is clear: the Celiac Disease Foundation seeks to accelerate research to identify treatments and a cure for celiac disease. Since our founding almost 30 years ago, we have known that successful fulfillment of this vision demanded that we be the voice of the celiac community in the corridors of power in and around Washington, DC, where most of the important decisions about disease research funding and disease treatment approvals are made.
While we have enjoyed some success in having our voices heard, including serving on the Planning Committee for the 2004 NIH Consensus Conference on Celiac Disease and shepherding the landmark FDA gluten-labeling mandate, we have always understood that we must do more.
Between Congress, HHS, NIH, FDA, USDA, DOD, VA, PCORI and other agencies with considerable influence over research funding, drug approvals, insurance access/coverage, and diagnostic and treatment protocols, something happens in Washington that impacts the celiac community virtually every day. To ensure our community gets the representation it deserves, we are delighted to announce that we have retained Ben Nicholson, a consultant based in Washington, DC, to provide legislative, policy, and advocacy services for the Foundation.
After serving in the U.S. Coast Guard as a Commissioned Officer for nearly a decade, Ben worked at the U.S. House of Representatives as a professional staffer for 12 years, including seven years as Staff Director for a major House Appropriations subcommittee. He went on to join one of the largest U.S. defense contractors as Vice President of Government Relations. He also serves on the Board of the Government Affairs Institute at the McCourt School of Public Policy at Georgetown University.
In Ben’s words:
“I am excited to take this position with the Celiac Disease Foundation. I was diagnosed with celiac disease in 2015, and like many others, I continue to struggle with disease symptoms despite strict adherence to a gluten-free diet. Initially, my primary task will be helping those with the power to fund and the power to regulate, understand the seriousness of celiac disease and its devastating impact on the health and quality of life of millions of Americans. As I navigate the Hill and the Executive Branch, I am often shocked by the pervasive ignorance of or misconceptions about celiac disease. As we educate critical influencers in Washington, I am confident that federal research money will increase and the regulatory environment will improve, thus advancing diagnostics and accelerating research towards treatments and a cure.”
The Celiac Disease Foundation is committed to ending the suffering caused by celiac disease. We are committed to identifying treatments and a cure. We are delighted to bring Ben on board to contribute to this sustained and growing effort.
As always, all of the work we do on behalf of the celiac community is made possible by you. As always, you have my gratitude.
To Our Health,
Marilyn G. Geller, CEO
Marilyn’s Message February 2019