As I write my final column as president of the ACR Research and Education Foundation (REF), I would like to take the opportunity to reflect on the advances we have made over my years of service in a leadership capacity.
I have had the great pleasure of serving on the executive committee and board of directors of both the ACR and the REF. These are incredibly strong organizations with staff and volunteers of the highest quality who demonstrate unwavering commitment to the advancement of our organizations.
As with any organization that has passionate, committed people at the helm, there are always debates and intense discussions. Throughout these discussions, I have never once felt that any decision was made for the wrong reasons and without thoughtful consideration of the missions of our organizations, needs of our members, and benefits to our patients. Of the many decisions made over the last four years, one of the most important was to empower the REF to become a true fundraising and grant-making organization.
The mission that guides the activities of the REF is, first and foremost, to support the goals of the ACR to ensure a bright future for our profession and for our patients with rheumatic diseases by providing awards to recruit, train, and develop the careers of rheumatologists and rheumatology health professionals. In order to meet this goal, the REF’s core awards portfolio is geared towards maintaining healthy academic rheumatology units—without which our subspecialty would cease to exist.
Healthy academic units are composed of clinical scholars, skilled educators, and researchers who inspire the best and brightest young people to become committed to our field. We have increased our annual funding for these awards from $500,000 in 2000 to $5 million in the 2009 budget. To support this increase, we have increased our Annual Giving Campaign and have a long-term goal of raising $1 million a year from non-industry sources, which include ACR and ARHP members, other foundations, and the community.
We have started to build an endowment that will sustain our ability to fund the core portfolio in perpetuity and have developed a full-service Planned Giving Program that will ultimately be the most effective way to build the endowment. My hope is that, as we continue to provide a portfolio of grants that meet the needs of the rheumatology community and promote the awards we support, we will be successful at raising the $1 million a year from non-industry sources and building our endowment.
With researchers suffering from the declining availability of funds from the National Institutes of Health and other sources, the ACR charged the REF to develop our capacity to fund research through a disease-targeted research program focused on rheumatoid arthritis (RA). The REF developed and implemented the Within Our Reach: Finding a Cure for Rheumatoid Arthritis campaign, which has raised nearly $25 million and funded 45 peer-reviewed grants for $18 million in the last three and a half years. Many of the gifts have come from patients with RA and their families who value the REF’s commitment to using 100% of their donations to Within Our Reach to fund research.
What, then, is the value of the advances made at the REF over these last four years to the members of the ACR and the ARHP? First and foremost, we have developed the capacity to raise funds to support our grants program. We have a strategy to engage our members as advocates for the foundation and to allow us to enhance the culture of philanthropy within the ACR and the ARHP. These advocates have served to connect patients with an interest in research with the opportunities afforded by the grants programs of the REF.
Also, the value is in the research the REF is funding. For example, we recently reported on an REF-funded project that found important prognostic information about long-term childhood-onset systemic lupus erythematosus, helping clinicians educate their patients about future outcomes and how to prevent comorbidities. Another project links body composition to RA disability, and by understanding this linkage, clinicians can improve their patients’ quality of life.
As I complete my service to the REF, I recognize that our efforts are still in their early stages. However, I depart with full confidence in the quality and integrity of the grants portfolio and administration, as well as in the volunteers and staff we have in place to carry out the mission of the REF.
My fervent hope is that the members of the ACR and the ARHP will increasingly recognize that the REF is an organization that provides desperately needed funding for research and training in our field that ultimately benefits rheumatologists, health professionals, and patients suffering from rheumatic diseases.
Thank you for an amazing four years, and please continue to support the REF’s efforts to fund rheumatology training and research programs that are vital to improving care for your patients.
Dr. Crofford is the president of the ACR Research and Education Foundation and chief of the Division of Rheumatology at the University of Kentucky in Louisville. Contact her by e-mail at [email protected].