As Associate Vice President of National Advancement and Volunteer Engagement for the Crohn’s & Colitis Foundation, Rhondell Domilici raises critically needed funds to support the organization’s mission to find cures for Crohn’s disease and ulcerative colitis and to improve the quality of life for patients who are living with these conditions. Rhondell’s work is deeply personal: Crohn’s disease has been part of her life since she was diagnosed at the age of 12.

“It was a little-known disease at that time, and it was a difficult age to be set apart from the norm,” Rhondell recalls. “I missed many things in my teen years due to illness, hospitalizations, and surgeries – many days of school, a highly-regarded summer theater program, a night of my senior high school play, the list goes on.”

Crohn’s is a chronic autoimmune disease that causes inflammation throughout the gastrointestinal tract. It affects over a half million people in the United States.¹ Although there is evidence that genetics, the microbiome and the environment all play a role in the development of Crohn’s disease, there is still much about the disease that is not understood. Symptoms of Crohn’s disease include abdominal pain, diarrhea, fatigue, weight loss, and even malnutrition.² Along with ulcerative colitis, which affects the large intestine, Crohn’s is one of the most common forms of inflammatory bowel disease (IBD), which affects millions of Americans, both adults and children – and the prevalence of which is steadily increasing.³

Rhondell lived with Crohn’s for a decade before the increasing availability of more treatment options gradually allowed her to shift the focus of her struggles with the disease to managing the associated physical pain and fatigue, as well as the anxiety and depression those symptoms caused her. Seeking to find an IBD community and help others affected by Crohn’s and colitis, she became a volunteer with the Crohn’s & Colitis Foundation, which awards grants and fellowships in support of research into treatments and cures for Crohn’s and has distributed close to half a billion dollars to researchers since its founding in 1967.⁴

Rhondell eventually joined the Foundation’s full-time staff after over a decade of volunteering, and through a colleague she learned about the Congressionally Directed Medical Research Programs’ Peer Reviewed Medical Research Program (PRMRP), which supports high-impact, translational research into a wide range of diseases and conditions that promise near-term benefits for Service Members, Veterans, and their beneficiaries. IBD was first offered as a PRMRP Topic Area in fiscal year (FY) 2008 and again in FY10-FY23. In FY19 and FY20 alone, the PRMRP allocated $20.1 million to support research into IBD treatment and prevention.

As a consumer peer reviewer in FY21 and FY22, Rhondell helped ensure that the research grants approved by PRMRP were of the highest quality in terms of the research being proposed and the potential impact on the patient community. She remarked that the experience provided her with meaningful insight into how invested the scientific community is in advancing basic and translational research, mechanistic studies, precision medicine and biomarkers, clinical research, and efforts to discover better and safer treatment options for IBD.

Rhondell stresses that being a consumer peer reviewer requires a significant commitment of time and attention, but the program team provides plenty of information to help reviewers understand the process. In return, the rewards – to the reviewers themselves and to the Crohn’s community – are worth it.

“My experience as a consumer reviewer has been very impactful and meaningful,” Rhondell said. “Both times I served, I experienced a real sense of honor and pride. Being involved with the CDMRP peer review has been a pleasure!”

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision.

References:

¹Definition & Facts for Crohn’s Disease. National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/digestive-diseases/crohns-disease/definition-facts

²What is Crohn’s Disease? Crohn’s & Colitis Foundation. https://www.crohnscolitisfoundation.org/what-is-crohns-disease/overview

³Uniting to Care & Cure: About the Crohn’s & Colitis Foundation. Crohn’s & Colitis Foundation. https://www.crohnscolitisfoundation.org/about

⁴Prevalence of IBD. Centers for Disease Control and Prevention. https://www.cdc.gov/ibd/data-and-statistics/prevalence.html