First, I hope this email finds you and your loved ones safe and healthy. This past year has taken a toll on our minds and our bodies. At every opportunity, we must take the time to care for ourselves and for each other.
Second, even though COVID-19 has been virtually all-consuming in the biomedical research community, we, thanks to your sustained support, are continuing to make progress in accelerating research for celiac disease. The Celiac Disease Foundation is moving aggressively in research, education, and advocacy to bring treatments and a cure to our patient community. In this message, I want to share with you highlights of our advocacy plans for the coming few months. This is a long email, but I think you will find the information relevant to our shared goals.
2021 Patient Education & Advocacy Summit — Our inaugural Patient Summit in Washington, DC last year was an incredible success. We gathered in one room many of the leading celiac disease researchers, representatives of both the House of Representatives and the Senate, as well as a distinguished group of patient advocates for an all-day session that stressed the centrality of advocacy at the federal and state levels in our efforts to advance the search for treatments and a cure. The day before, teams of patient advocates and researchers went to Capitol Hill to meet with our elected representatives and their staff. On March 4, 2021, we are doing it all again, virtually. The line-up of this year’s speakers is equally impressive and we will be training a new cadre of citizen advocates to continue to push Congress and the new Administration to fund celiac disease research at the levels it clearly deserves. For more details on the 2021 Summit and to register to attend, click here.
NIH Accelerating Progress in Celiac Disease Workshop — As part of the response to the report language in the NIH appropriations bills for FY2020 and FY2021 advocated for by the Celiac Disease Foundation, the National Institute of Allergy and Infectious Disease (NIAID) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) are co-sponsoring in March 2021 a virtual workshop, Accelerating Progress in Celiac Disease. I have been invited to speak on the “Patient Experience with Celiac Disease.” In our conversations with Congress and with NIH, we have been pushing aggressively for NIH to develop a strategic plan to find a cure for celiac disease. This workshop is an important step by NIH towards that goal. In the coming days, we will be requesting input from you and the rest of our patient community to inform my presentation.
NIH Autoimmune Diseases Coordinating Committee — After my May 2020 presentation on “Unmet Need in Celiac Disease – Patients’ Views” to the NIH Autoimmune Diseases Coordinating Committee, the Celiac Disease Foundation was invited to join this pan-Institutional Committee at NIH that is critical to the strategic development of research initiatives that overlap multiple autoimmune diseases like type 1 diabetes and celiac disease. Again, this is part of the progress we are seeing as a result of the Congressionally-directed report language in the FY2020 and FY2021 budgets.
FY2021 NIH Appropriations — For the second consecutive fiscal year, we have succeeded in our efforts to include in NIH’s annual appropriations bill specific language requesting action on celiac disease (although the current fiscal year is well-underway, much of the federal government, including NIH, is still working under a continuing resolution). We expect that the FY2021 NIH appropriations bill will be passed in the coming weeks in the new Congress and, once again, our language for celiac disease will be in there with the force of law. To read this year’s language, please click here.
I am relatively confident that later this year, COVID-19 will be well-managed by vaccines and other mitigation efforts and that our lives will begin to return to normal. For individuals with celiac disease, however, there is no normal. Every living day can be a never-ending struggle.
That is why we have not let up, even for a moment, in our pursuit of treatments and a cure. Our work in Washington, DC, with Congress, with the NIH, FDA, and other government agencies, is absolutely critical to our eventual success. Your generosity, especially now during these turbulent times, enables our work.
Wishing you the best of health,
Marilyn G. Geller
What 2021 Holds for Celiac Disease – Marilyn’s Message January 2021, Celiac Disease Foundation