CARES Foundation: Rising from the Ashes – Beating the Odds

How does a small health organization with a huge mission accomplish its mission critical goals despite the odds? We believe it is by harnessing the power and passion in people and leveraging technology to the maximum.

CARES Foundation was founded in 2001 by Kelly and Adam Leight, after their child was diagnosed with non-classical Congenital Adrenal Hyperplasia (CAH). Faced with an unfamiliar diagnosis and an unclear prognosis, a frightened Kelly set out to gather information and support as well as to identify expert medical guidance to secure her child’s safe future. Like so many parents faced with a rare disorder, Kelly was dismayed to find a dearth of information: there was no centralized resource for patients and little in the way of support for families. Even more disheartening was the realization of how little the general medical community knew about CAH, and, by inference, how many children, adolescents, and adults in the population remained undiagnosed, despite the range and severity of symptoms that severely impact their quality—and length—of life. And so, in 2001, sitting at her kitchen table, Kelly mapped out a plan. Fueled by her desire for accurate and current information about CAH and a place to connect with other people affected, Kelly created CARES Foundation.

CARES Foundation is committed to providing the best available information, support, and guidance to those living with CAH through proactively advancing research for a better understanding of CAH, better treatments and a cure; educating the public and healthcare professionals about all forms of CAH; advocating for universal newborn screening and emergency medical response; and providing support services and resources vital to the CAH community worldwide.

In 2001, with a lofty goal of improving the lives of people with this potentially life-threatening, complex genetic disorder, the organization began with one computer, an old version of Word (for newsletters and correspondence), Excel (to track donors) and Outlook (for membership contacts). As news about the organization and our programs grew, it quickly became clear that this technical solution was only a short-term answer. CARES Foundation’s needs were complicated and we only had a skeletal staff and limited financial support. As we evaluated our options, we realized that the Microsoft products offered much of what we needed. Unfortunately, we also found that there was no cost effective package we could purchase given our small budget and rapidly changing needs.

Upon discovering TechSoup, we were thrilled to learn that we could afford new software. We upgraded our MS Office Suite to the newest version. We moved our newsletter from Word to Publisher and were able to quickly develop creative, eye-catching newsletters that could communicate our message in a much more effective manner and raise awareness about this potentially life-threatening disorder. We also made the decision to use Access for all our database needs. It provided a low cost and flexible solution to our problem. That was a turning point for us.

With Access, we were able to build custom solutions that met our unique requirements. As our programs and needs changed, we were able to respond quickly in kind. We were able to integrate Word with Access so that with a click of one button, we could create thank you letters to our donors. This saved countless hours of tedious duplicate entry and reduced errors. We were able to store email addresses in Access and again with one click, seamlessly link to Outlook.

With our new multi-user database, we were easily able to share information over our network. Access provided a hub of information that all the staff use in a myriad of ways to support our programs. When an affected individual called, each staff member knew what conversation we had with them in the past, who spoke to them and what they needed. We were able to offer a physician referral service by creating quick reports to identify experienced physicians in their area. We were able to connect families struggling with complex medical issues with others who had “been there” before and could help them along. Using our database, we were able to reach out to our members to let them know about new clinical trials that were available to them and bring them together for educational conferences. Researchers turned to us to provide them with statistical data. We could provide that information quickly and easily as the only comprehensive CAH database in the country.

Then came the fire. On February 17, 2006, our offices burned down taking with it all our electronic records. Our backup drive sat right next to the server – the hottest part of the fire. No records were retrievable. It was devastating. All the data accumulated over five years, lost – including the contact information for our members and donors.

We needed help and fast. Ten days after the fire, we had rebuilt our Access database structure. We loaded what names and addresses we could from a recent file our printer had saved from our last mailing campaign; but we had lost our members’ emails and medical data. This time it was Frontpage that came to our rescue. We updated our website using FrontPage to let our community know what happened and asked them to “rejoin” through our website. We reached out to them via postcards and on CAH bulletin boards. Again, using Frontpage, we created an online survey to gather members’ family medical information and then used a backend interface into Access to load it into our database. Like a phoenix from the ashes, we began to rise again.

The Microsoft donation we received through TechSoup has enabled us to maximize our limited resources and dramatically change the lives of thousands. Furthermore, this technology enabled us to respond to a tragic situation that could have easily ended our organization. At the end of 2002, we supported 100 families affected by CAH in a handful of states. Today, our membership includes over 2,500 affected individuals and families and 900 health-care professionals in all 50 states and in 60 countries. We provide one-on-one support for affected individuals and their families; have 21 support groups in the United States and 13 internationally; produce a 12-page newsletter quarterly; provide resources for the care of CAH patients; and have hosted seven educational conferences across the country attended by nearly 2,000 people from around the globe. We have been able to do this in large part because of the Microsoft software donation program. By harnessing the power and passion in people and leveraging technology, what began at a kitchen table with a mother’s desire to ensure her child’s health and wellness, has grown into a network of people providing education, life-saving treatments and hope to people across the United States and abroad. Thank you TechSoup and Microsoft for your help in making this possible!