The Giorgio Foundation Announces Creation of NF1 Dermal Neurofibroma Consortium to Accelerate Research Into Effective Treatments
DUNCANSVILLE, Pa., Aug. 9, 2016 /PRNewswire/ -- The mission of The Giorgio Foundation (www.endnf1.org) is to facilitate research into effective treatments – and eventually a cure – for dermal neurofibromas, painful and disfiguring tumors associated with NF1. To that end, the foundation is issuing over $1.2 million in grant funds over the next four years. The establishment of the NF1 Consortium will empower leading researchers in the field to work together to discover effective treatments for this surprisingly common but little-known condition.
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"This is a quality of life issue for the many thousands of people living with disfiguring skin tumors, and medical science has no answers today," says Erin Borzellino. "The NF1 Consortium represents a first-of-its-kind initiative to support the development of dermal neurofibroma treatments and emerging therapies."
With symptoms first presenting in early childhood, approximately 1 in 3,000 children will be diagnosed with NF1. More people are living with NF1 in the U.S. than cystic fibrosis and muscular dystrophy combined, yet awareness of the condition is almost zero. In the most severe cases, the condition results in people being covered in hundreds or thousands of tumors, as well as internal tumors throughout the body. NF1 causes this disfigurement by disabling a single gene that controls tumor growth.
More alarming than the physical signs are the potentially life-threatening complications, such as malignancies in the brain or spinal cord. Doctors agree that the condition shortens life spans, even when tumors do not become malignant. Bone destruction, nerve damage and blindness are other potential consequences of NF1.
The NF1 Consortium's research will begin with the development of in vitro (cells) and in vivo (mice) models of the condition. Doctors will investigate factors leading to the worst cases of skin tumor growth. In addition, the research team will look closely at why some cases don't progress to disfiguring tumors.
At press time, the consortium included Dr. David H. Gutmann of Washington University, Dr. Lu Q. Le of the University of Texas Southwestern Medical Center, and Dr. Robert Kesterson of the University of Alabama, Birmingham.
On November 19, The Giorgio Foundation will be hosting "An Evening to End NF1," which will include a presentation on the research being spearheaded by the NF1 Consortium. Last year's event brought in over $206,000 in donations. Thanks to a dedicated philanthropic fund, The Giorgio Foundation is able to use 100% of all donations to directly finance important and hopefully life-changing research. Tickets for "An Evening to End NF1" are available at www.endnf1.org.
About The Giorgio Children's Foundation for NF1
The Giorgio Foundation was established in 2013 by the Borzellino family to fund research into a cure for NF1 Dermal Neurofibroma. The foundation's mission is to enhance understanding of this condition and empower focused research into treatments and cures for NF1.
Contact:
Erin Borzellino
917-287-9628
Email
SOURCE The Giorgio Foundation
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