The mission of the Alliance is to fund research of Pheochromocytoma and Paraganglioma and support a greater understanding of these diseases through grants, education and advocacy in the US and worldwide.
Looking back at my past two years as Chairman of the Pheo Para Alliance I am heartened by our many accomplishments. Looking ahead I realize we still have much to accomplish.
Over the past year we have continued to support research efforts dedicated to diagnosis, treatment and cure of these diseases as well as outreach, advocacy, and educational activities.
The Pheo Para Alliance Web Site, which was launched in 2008, continues to provide information and services to patients, their families, health care professionals, and the general public. The website is undergoing renovations to reflect the many updates and progress being made by dedicated researchers.
We have entered into a partnership with the Pheo Para Troopers, a patient support and advocacy organization. We shall be working on collaborative projects in the areas of patient support, education, and advocacy.
We had a very successful Spreading the Word Gala in Washington, DC. I want to express our sincere gratitude to our donors for their continued financial support . Their generous donations have made all of this possible.
We welcome new Board members Betsy Herold and Salley Wood who, we know, will enhance and support all of our endeavors.
And of course, I want to thank the entire Board for their support over these two years. We are very much looking forward to the steady and intelligent direction of our new Chair of the Board, Emily Collins.
Acting in accordance with our Mission Statement the Pheo Para Alliance has accomplished the following in 2016:
Fourth Annual Patient Symposium
The Alliance funded this very important symposium. This event provides speakers and workshops to educate, support, empower, and advocate for patients and their families.
Asian Alliance for the Study of Neuroendocrine Tumors Symposium
The Alliance sponsored this symposium which will be held in March 2017 in the Phillippines. This symposium is for patients that are affected by pheochromocytoma and paraganglioma and for practitioners that wish to learn how to diagnose the diseases as well as available resources for treatment. The Asian Alliance sends Fellows to the NIH who work on a volunteer basis on the Pheo Para protocol.
Tufts University Medical Center
The Alliance continued it's grant to the Tufts University Medical Center to support the work of Dr. Arthur Tischler. Dr. Tischler is a pathologist whose research focuses on neuroendocrine cell biology with a particular emphasis on the adrenal medulla and adrenal medullary tumors. Dr. Tischler's work has had a significant impact in the understanding of the pathology of pheochromocytoma and paraganglioma.
The Alliance joined with the Pheo ParaTroopers, a patient support organization, for the express purpose of further educating and empowering patients, families, and healthcare professionals in regard to pheochromocytoma and paraganglioma.
A5 SDHB Genomics Study
The Alliance funded this international collaborative research project that is being spearheaded by researchers at the Peter McCallum Cancer Center in Melbourne Australia.
This project seeks to fine=d new strategies for diagnosing and treating metastatic SDHB-associated pheochromocytoma and paraganglioma.
National Institute of Child Health and Human Development
The Alliance provides stipends to visiting Fellows at the NIH while they continue their training in the field of endocrinology and the study of neuroendocrine tumors, which include pheochromocytoma and paraganglioma.
The Pheo Para Alliance is committed to the highest standards of good stewardship and accountability. The Pheo Para Alliance is incorporated according to the not-for-profit laws of the State of Virginia.