I am pleased to report that the newly established SDHB PheoPara Coalition is up and running as of January 2017. We have formalized our legal status as well as our 501(c)(3) tax-exempt designation from the IRS, thereby enabling us to conduct fundraisers and start to support Research and Educational initiatives. Additionally, we have appointed our Board, established our Bylaws, set up the necessary operational structure and committees, and developed a new website. Finally, we have planned our first Gala for April 20th, 2017 in New Jersey, and are looking forward to introducing our new organization to patients, healthcare professionals, friends, and supporters.
The mission of the SDHB PheoPara Coalition is to first educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease. Pheochromocytomas and Paragangliomas are neuroendocrine tumors, and those patients who present with an SDHB genetic germline mutation are unfortunately associated with much higher rates of malignancy. Furthermore, there are no cures for this disease and the treatments are inadequate. Today, we lack effective chemotherapeutic and radiation therapies that can give these patients hope and help them survive this orphan disease. Therefore, the second part of our mission will be to focus on supporting research which will ultimately lead to an effective treatment of the SDHB form of the disease. To accomplish this objective, we will conduct fundraisers as well as attempt to gain access to other potential investors, so that we can provide educational and research grants from the proceeds in an effort to advance science in this important and underserved area. We will also partner with other organizations and academia to try and learn more about the disease and what treatment options might exist that could be effective.
Finally, we have created a website which we hope will be a resource to patients and Healthcare professionals alike where they can access information on the symptoms of the disease, the diagnosis, and importantly the location of medical centers and doctors that can provide assistance today.
Our objectives for 2017 are as follows:
- To successfully launch the SDHB PheoPara Coalition as a 501(c)(3) nonprofit organization.
- To spread the word about the existence of our organization, and to fully fund, organize and staff the Coalition so that it can start to address its mission.
- To have a successful fundraiser with our Gala on April 20th, 2017 in New Jersey.
- To support at least 2 or 3 good SDHB scientific projects which will lead to a better understanding of this orphan disease and ultimately an effective treatment.
- To partner with other interested organizations in this field who share a common purpose such as the Paradifference.
Thank you for your interest and continued support.
SDHB Pheo-Para Coalition