Denied Grant RFA RR-03-008 For Hemangiomas & Vascular Malformations

A very important grant has been denied. It is needed to help fund research and treatment studies for Birthmarks. This study would have helped many families and saved some lives (yes, some Birthmarks can be life threatening).

Please read this petition and sign it. If you know other people who would be willing to sign this, please forward it to them.

If you need more information about Hemangiomas and other Birthmarks, please visit my support group and learn more. My site is at http://tarheelhemangiomas.tripod.com. Please read on to learn more about this Grant.....

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I just received a letter from NYU Medical Center stating that an NIH Grant that they applied for in collaboration with several other Hemangioma & Vascular Anomaly Centers was denied. While the acknowledged that the proposal for this grant "stood out" but was denied on a scientific review. The Grant would have funded an effort to organize and collaborate a Clinical Network between institutions. The network involved NYU, Boston Children's Hospital, Vermont Children's Hospital, USCF, Arkansas Children's, Hemangioma Newsline, Klippel Trenaunay Support Group, The lymphatic Research Foundation, National Foundation for Facial Reconstruction and a few other support agencies.

THIS FUNDING WOULD HAVE PROVIDED CRITICAL FINANCIAL SUPPORT TO HELP EXPAND THE MEDICINE AND SCIENCE OF HEMANGIOMA AND VASCULAR MALFORMATION, AS WELL AS COORDINATE PATIENT SUPPORT IN THE FIELD.

Because the NIH denied this grant the necessary funding will not be available to the institutions thus delaying the development of a multicenter organization. THIS DENIAL WILL EFFECT OUR CHILDREN.

According the to physicians involved it is apparent that some politics are involved in these applications and while it is not clear what programs have received funding it is suggested that some already well funded programs have received more funding from the NIH.

Groups like the Hemangioma Newsline will not receive funding in this grant. It is specifically for the medical centers involved.

Who should sign this petition? Parents, family members, friends, or anyone concerned about the welfare of babies, children, and adults can sign it.

HERE IS HOW WE CAN MOBILIZE TO GET ACTION:

WRITE:
Giovanna M. Spinella, MD
Director, Extramural Research Program
Office of Rare Diseases, OD, NIH
6100 Executive Blvd. Room, 3B01-MSC7518
Bethesda, MD 20892-7518

CALL: 301-402-4336

FAX: 301 480-9655

EMAIL: spiellgod.nih.gov

Please state your disappointment that:
* The NIH denied RFA RR-03-008
* How this disease affected your child/self
* How difficult it was to find treatment
* How there were not established protocols and guidelines to treat your child/self causing confusion and frustration

For More information you can write to Karla at her email
[email protected]




Also, you can call, email, or mail this person to tell him that you disapprove of the decision.

Thank you for your help!

Shannon Smith