REF: Looking at Recent Achievements and FInding Inspiration for the Future

As the term of my presidency at the ACR Research and Education Foundation (REF) comes to an end, it’s a good time to reflect on the past two years. While it’s important to recognize the REF’s milestones and major achievements—and I will do that in a moment—great work is being done every day by rheumatologists, healthcare professionals, and investigators. It is their goal to improve the treatment and care of people impacted by rheumatic disease, and it’s our mission to provide them with the resources to support their efforts.

We sometimes focus on the goals so much that we lose track of why we raise funds for research and training in the first place. Recently, the REF received a letter from a young girl who helped bring it all in focus. I’d like to share a part of it here to remind us why we strive doggedly towards reaching new milestones.

“My name is Madison,” the letter begins. “I love Pokémon and my favorite animal is a fox. My favorite food is chicken soup.”

She goes on to explain that her mother has had rheumatoid arthritis (RA) “for almost two years now and she has been fighting it.” Along with the letter, Madison sent a check. “To get money, I did chores and a friend of my mom’s donated money too,” Madison writes. “I would love it if someone found a cure.”

It is for people like Madison and her mother that we began the Within Our Reach: Finding a Cure for Rheumatoid Arthritis campaign. As we announced previously, we exceeded our initial goal when we reached $30,719,054 in funds earlier this year. More than three million of those dollars came directly from patients and families affected by RA who wished to support our work of finding a cure for this disabling disease.

The Within Our Reach campaign has already funded $24.4 million in RA research grants, and our development staff is hard at work on the next phase of this initiative. Ultimately, our goal is to find a cure for RA, but in the meantime the research funded by the REF continues to illuminate new possibilities for improved treatment and care.

At the same time, we have been funding our core awards and grants programs at a record rate. The best way to realize our mission is to ensure that a steady stream of well-trained rheumatologists and rheumatology health professionals are joining our ranks to provide the best in medical care and innovative treatments. The article titled “Researcher Looks at Link between Arthritis and Eye Disease” is an excellent demonstration of how the research we fund can ultimately impact patient care.

To that end, REF’s extensive awards and grants program provides more than $10 million each year to fund research, training, and education opportunities for medical students, residents, fellows, clinicians, researchers, and health professionals.

This past year at each of the meetings of the REF Board of Directors, I reported our progress toward meeting the objectives of our strategic plan. Regarding one such objective, I was delighted to inform the Board that the REF had funded all of the applications graded as “outstanding” for our core programs, affording the “best and brightest” an opportunity to reach their maximum potential.

The Board was also pleased to hear about the continued support from our industry partners through the Industry Roundtable—the monies from which are invested entirely into our core programs. In addition, I shared the new ACR and REF policies and procedures for coordinating fundraising activities. The growth of both organizations and the challenging regulatory climate has required new ways to interact with our donors. It is important to remember that our donors support not only research and training—the mission of the REF—but also the education of our rheumatology workforce, a mission shared between the REF and the ACR.

Finally, I proudly announced that last November, the REF achieved a four-star rating from Charity Navigator, the highest ranking accorded to charitable foundation—a most gratifying result.

What will it take for the REF to meet its ambitious fundraising goals in the future? One focus of the REF will be to grow its base of support from ACR/ARHP members. Last year, 16% of the entire ACR/ARHP membership donated to the REF Annual Giving campaign, totaling $480,946.

Although we are grateful for this level of support, more members need to be persuaded of the value of this investment. We hope, too, that more of our senior members will recognize the wisdom of ensuring the future of rheumatology through planned giving and feel the satisfaction of joining the Legacy Society.

Additionally, the REF must substantially increase its charitable contributions from lay donors. This step in the evolution of the REF is perhaps the most challenging and will be essential to meeting our future goals. It will demand both a renewed commitment from our volunteer health professionals as well as much greater participation from the lay public in fundraising activities, including positions of leadership. I encourage everyone to read “REF Volunteer Brings Passion for Communicating to New Program” as inspiration for how we can help build relationships with those directly affected by rheumatic disease. In addition, our industry partners must continue to appreciate the value of their charitable contributions to the REF. These donations have been vital to the success of our core programs as well as the Within Our Reach grant program.

It is a new era at the REF, and we would not be here without you. As we transition into new leadership at the REF, I look forward to seeing what we can accomplish in the future.

Dr. St.Clair is president of the ACR REF and interim chief of the division of rheumatology and immunology at Duke University in Durham, N.C. Contact him at [email protected].