What a Bold Vision and Dedication Can Achieve

By Leslie Crofford, MD

Over the past two years, the American College of Rheumatology Research and Education Foundation has talked a lot about Within Our Reach: Finding a Cure for Rheumatoid Arthritis-the REF campaign to raise and award funds for investigator-initiated research to find a cure for RA.

So, why has the REF embarked on this major campaign, which is unprecedented for a medical foundation to do? The simple, yet complex, answer is: because it was time.

The issue of declining funds for rheumatology research was brought to our attention by the ACR Committee on Research. Because funds from the National Institutes of Health were-and still are-tight, and Arthritis Foundation research funding was-and still is-declining, it was vitally important that we assess the situation. Therefore, in March 2003, a task force was convened to look at the numbers and to see what should be done.

For two years, task forces led by ACR and REF leadership painstakingly studied and evaluated grant program models to identify the model that would be most successful. They studied other organizations that raise significant funds for research and it became abundantly clear that the most effective models focused on a single disease and spent all of the funds raised on research and research advocacy.

Based on the data showing the allocation of NIH research dollars for RA on a per patient basis lagged far behind that for other autoimmune inflammatory diseases such as type I diabetes and lupus, the task force further recommended that the logical disease for a potential campaign was rheumatoid arthritis.

The next step came in 2005 when the Scientific Forum brought together the world's leading RA researchers to identify opportunities to move RA research forward. Although it was clear that the development of biologic treatments was a tremendous advancement for our patients with RA, prevention, remission, and cure remained elusive but achievable goals. Furthermore, these researchers noted real problems in bringing advances in current treatments to all patients with RA and opportunities to address the other diseases that affect patients with RA.

The recommendations from the Forum were translated into the Within Our Reach grants program encompassing innovative basic research, translational research, clinical practice, novel clinical trials and collaborative projects.

Of course, it is far easier for the REF to propose a research grant program than to raise the major funding needed to achieve our goals. We had virtually no experience and little staff in place to realistically succeed. Recognizing our need to go outside our own organization for expertise, we hired a consultant to develop a feasibility study and a fundraising plan, and from that, we determined that a major gifts campaign to raise $30 million over 40 months was achievable.

With the help of our onsite counsel, Within Our Reach, the fundraising campaign, came to life. We learned that momentum was essential and to that end, and the first gift to the campaign was from the ACR. We also received early and important gifts from industry partners committed to independent, academically-based science, which helped us maintain that momentum.

A completely unique aspect of the fundraising campaign is how we engage the ACR and ARHP membership to work with us in raising these very important funds. For example, a committed group of rheumatologists, known as the Within Our Reach Leadership Council, have helped us raise over $1.5 million in first-time gifts from the lay community, and at the time of this writing, we have raised a total of $23 million, which is not far from our goal of $30 million.

In addition to the great strides made in fundraising, I am delighted to share that we have funded 30 grants amounting to $12 million thus far, and we will continue to fund grants annually until the entire $30 million has been spent. The grant recipients are outstanding basic and clinical scientists-some new to the field of RA research. Publications resulting from this work, and NIH grant applications, are already starting to appear, and the REF is diligently working to ensure that these bright researchers are funded.

In August, we held our first investigators meeting where we not only reviewed the ongoing work, but charged these talented investigators with helping us begin to develop a national plan to address the problems which have, up until now, limited our effectiveness as rheumatologists. This may include a comprehensive plan to assemble very large cohorts of RA patients that are clinically characterized (e.g., patients who are at high risk for developing RA according to genetic and environmental factors, and have biospecimens rigorously collected and stored). Most importantly, these resources would be freely available to scientists.

Of course, these efforts will require investigators who are dedicated to working together, as well as creative partnerships to fund them. The Arthritis Foundation remains an important partner, and we are working to develop effective strategies to partner with the NIH.

As we have already seen, we can accomplish ambitious goals, but only if we are bold and dedicated enough to start. I congratulate the previous leaders of the ACR and REF on their bold vision and hope that we can all work together towards our goals to make prevention, remission and cure of RA truly within our reach.

Leslie Crofford, MD is the president of the ACR Research and Education Foundation and Chief of the Division of Rheumatology at the University of Kentucky. Contact her by e-mail at lcrofford@rheumatology.org.