2012 Annual Chairman's Report

PheoPara Alliance

P.O. Box 504

Arlington, Virginia 22216

Mission Statement

The purpose of the Alliance is to spread the word about Pheochromocytoma and Paraganglioma, support and fund research that will lead to better treatment options, and ultimately to find a cure. The Alliance is working with Health Care Professionals, Research Centers, Academic Centers and Patients through outreach and educational activities in the United States and worldwide to increase awareness and share information that can lead to a better understanding of this disease.

 Chairman's Report

Since the inception of the PheoPara Alliance almost six years ago, it has been our mission to spread the word about Pheochromocytoma and Paraganglioma by raising public awareness about the symptoms, diagnosis and treatment of this disease by supporting educational programs and conferences directed at health care professionals and patients. We are also involved in various networking programs by focusing on outreach and advocacy. The growth and loyalty of our supporters and donors over the last few years is a testament to the quality of the programs we support and the services we provide. In addition, we are proud of the research programs that we have supported in the past few years which continue and are designed to increase our knowledge about this disease and improve treatment options as well as help scientists in the search for a cure.

Over the past year we have continued to grow the Board not only in numbers but in diverse areas of expertise by adding one new member. We have eleven dedicated Board members with interesting backgrounds all committed to the success of the Alliance. Unfortunately, this past year we lost one of our founders of the Alliance to the disease, Dr. Edward J. Kauffman, and he will be missed greatly.

We continue to work with and fund international researchers and organizations to collaborate with one another and to share information in Asia, Europe and the US. We also continue to lay the groundwork in an effort to establish Centers of Excellence for Neuroendocrine Diseases nationally and abroad where interest exists and to share best demonstrated practices among centers that treat Pheochromocytoma and Paraganglioma.

We had two very successful Spreading the Word Galas in New Jersey and Washington, DC in 2012. Both of these raised the visibility of the Alliance and our mission and had the added benefit of raising thousands of dollars to support the Alliance's activities. It should be noted that approximately 90% of what we raise from our fundraising is used to support research grants and educational activities. We want to express our sincere gratitude to our donors for their continued financial support. Their generous donations continue to help us realize our mission and keep our aspirations and dreams alive.

The PheoPara Alliance website, which was launched in 2008, was completely redesigned and re-launched in 2011. It continues to provide new information and services to patients, their families, health care professionals, and the general public but in a more user-friendly manner. Designed and developed with the help of a member advisory committee, our website had added a number of new features, and is linked to other sites providing access to dozens of related services and organizations. In the last year since we re-launched it, our site has already seen an increased number of hits, and we expect to continue to improve both the content and the services we provide over the coming months and years ahead.

In all of these efforts, I have been gratified and encouraged by the dedication and support of our generous donors, hardworking volunteers, and committed Board. I look forward to working with many of you in the coming year, and encourage you to view our 2012 accomplishments detailed on a separate tab. Your support is vital to the Alliance's success in Spreading the Word and finding a cure for this terrible disease, and we hope that you will join with us as we continue our journey.

Sincerely,

Timothy G. Rothwell

Chairman