Giorgio Foundation’s Research Consortium Published in Oncology Times
“Defining The Research Landscape for Dermal Neurofibromas”
The “Dream Team” of NF1 researchers working with The Giorgio Foundation, Dr. David H. Gutmann, Dr. Lu Q. Le, and Dr. Robert A. Kesterson recently published a piece entitled “Defining the Research Landscape for Dermal Neurofibromas” in Oncology Times on Sept 26, 2016.
This piece summarizes some of the specific areas of research the NF1 Dermal Neurofibroma Consortium of these three doctors and their respective labs will be exploring in the coming years. The Giorgio Foundation is proud to be the sole source of funding for this cutting-edge research to find answers for some of the least understood aspects of NF1.
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Giorgio Foundation Announces Formation of NF1 Dermal Neurofibroma Consortium
Foundation will issue over $1.2 million in Medical Research Grants
The Giorgio Foundation is a nonprofit foundation created to fund research for a cure for NF1 – a type of Neurofibromatosis. NF1 affects about 1 in 3,000 and is typically diagnosed in early childhood. NF1 disables the gene that normally controls tumor growth. The result is hundreds or even thousands of painful and disfiguring tumors on the skin, in nerve tissue, and throughout the body.
All NF1 patients fear the more rare life-threatening complications, such as tumors in the brain and spinal cord, or malignancies.
However, more than 80% of NF1 patients will have life-altering complications, the most prevalent being disfiguring skin tumors (dermal neurofibromas).
These tumors have a dramatic impact on employment, social interactions and quality of life.
Many millions of dollars are being dedicated already to researching the dangerous malignant and plexiform tumors, but there has been virtually no research into dermal neurofibromas.
In order to make an impact on quality of life for the largest population of NF1 patients, the Foundation teamed up with doctors at these Universities to form:
The Giorgio Foundation NF1 Dermal Neurofibroma Consortium
David H. Gutmann, MD, PhD Director, Neurofibromatosis Center Vice Chair for Research, Department of Neurology
University of Texas Southwestern Medical Center
Lu Q. Le, MD, PhD Associate Professor
University of Alabama, Birmingham
Robert Kesterson, PhD Professor, Department of Genetics Director, Transgenic & Genetically Engineered Models (TGEMS)
- The research team will use what is already known about dermal neurofibromas to develop in vitro (cell culture) and in vivo (mouse) models with NF1.
- Once dermal neurofibromas have been established in these models, they will be analyzed to determine what factors influence their growth (or in some cases what influences a certain type of NF1 gene mutation to NOT develop dermal neurofibromas).
- The ultimate goal of this analysis is to determine factors that could be relevant to new treatments.
Phase 1: Creation of the in vitro (cell) and in vivo (mouse) models
Phase 2: Analysis:
- What is causing the tumors to grow?
- Why, in some cases, do tumors not develop at all?
Phase 3: Preclinical therapeutic drug studies
Medical Research Grants
The Giorgio Foundation has issued $280,000 in grants to these Universities to initiate medical research. The 4 year plan is a total commitment of $1,280,000.
The NF1 Dermal Neurofibroma Consortium is comprised of an outstanding team of investigators with a strong history of collaborative research and a collective experience with the translation of pre-clinical findings, to clinical practice.
This program represents the first focused dermal neurofibroma initiative which aims to develop one-of-a-kind resources for the NF1 community and facilitate the discovery of promising dermal neurofibroma drug treatments.
It is also anticipated that this initiative will provide critical platforms to evaluate other therapeutic strategies, as well as generate new genetic models useful for studying other important NF1-associated clinical features and life-altering physical conditions.
Giorgio Foundation Awarded Guidestar Bronze
We are pleased to announce that The Giorgio Foundation has received the Bronze Certification, a leading symbol of nonprofit transparency and accountability provided by the GuideStar Exchange, a premier source of nonprofit information.
We have made a concerted effort to be fully transparent about our Mission and how we plant to allocate funds and grants, and we believe the receiving the GuideStar Bronze certification is a promising sign, especially considering The Giorgio Foundation has only been in existence for about a year.
Upon filing our Form 990, we plan to pursue the Gold level of GuideStar certification to act as yet another sign of confidence to our donors that funds are being treated with the utmost level of transparency.
You can see our initial filing at: http://www.guidestar.org/organizations/46-6548416/giorgio-foundation.aspx
About the GuideStar Exchange
The GuideStar Exchange is an initiative designed to connect nonprofits with current and potential supporters. With millions of people coming to GuideStar to learn more about nonprofit organizations, the GuideStar Exchange allows nonprofits to share a wealth of up-to-date information with GuideStar’s many audiences. Becoming a GuideStar Exchange participant is free of charge. To join, organizations need to update their report pages, completing all required fields for participation. The GuideStar Exchange level logos, acknowledged as symbols of transparency in the nonprofit sector, are displayed on all Exchange participants’ nonprofit reports.
Turkey Bowl Benefitting The Giorgio Foundation and We CARE Foundation
Plans are set for the 32nd Annual Turkey Bowl, a community football game fundraiser. This year the Turkey Bowl will benefit the We CARE Foundation and The Giorgio Children’s Foundation for NF1. Both Foundations work to help children.
The Turkey Bowl will be held Wednesday November 25, 2015 at 7pm at Mansion Park in Altoona, Pa. The event is being organized by community volunteers who support the We CARE Foundation and The Giorgio Children’s Foundation for NF1. Two teams will face off in the Turkey Bowl, the Giorgio Children’s Foundation Bucks and the We CARE Foundation Ducks. A prize will be provided for the top individual fundraiser.
Stephen C. Gildea, CEO at Tyrone Regional Health Network said it will be a great day for kids, in that two great organizations, focused on doing everything they can to help special needs kids, are pulling together to raise money for pediatric therapy and research into NF-1. “I think it’s a statement of the community-based focus of New Pig and Tyrone Hospital, the two local organizations that support the Giorgio Children’s Foundation and the We CARE Foundation, and how these organizations that still maintain their strong local roots are working together in a collaborative way to make this event happen.”
“The Giorgio Foundation is pleased to work with the We CARE Foundation on a fundraising event that will benefit both organizations. The Turkey Bowl has been a tradition in Blair County for over 30 years – it’s great that this game will continue, and that two local non-profit organizations can work together. We are blessed with tremendous local business and community support, and hope that support will continue with this event,” said Stephen Kline, Treasurer, The Giorgio Children’s Foundation.
Businesses, groups or individuals interested in supporting the Turkey Bowl as event sponsors can contact Kristy Replogle at (814) 201-2399 for details on sponsor opportunities.
Individuals who are interested in playing in the Turkey Bowl with either the
The Giorgio Children’s Foundation for NF-1 Bucks or the We CARE Foundation Ducks may call Timmy C at (814) 329- 6726 for details.
Community members are invited to attend the game. Admission is free to the public.
Funds raised via the Turkey Bowl will be allocated equally to the We CARE Foundation and The Giorgio Children’s Foundation for NF-1.
The We CARE Foundation supports We CARE Therapy Services. We CARE Therapy Services provides therapy for special needs children. Services offered are through the cooperative efforts of Tyrone Regional Health Network and ProCare PT, LP. Services offered at We CARE include physical therapy, occupational therapy, speech and language therapy, feeding and swallowing therapy, sensory integration therapy and special instruction. For more information about We CARE Therapy Services or the We CARE Foundation, please call (814) 201-2399.
The Giorgio Children’s Foundation for NF-1 seeks to help children by finding a cure through clinical research, and to advance the light of knowledge into Neurofibromatosis (NF-1). NF-1 disables the gene that normally controls tumor growth in our bodies. The result is hundreds or even thousands of painful and disfiguring tumors on the skin, in nerve tissue and throughout the body. Complications include disfigurement, damages nerves, bone deformities and even blindness. Early symptoms may be noticed in childhood or it may lie dormant during childhood. For more information call
(814) 686-2256 or visit www.endnf1.org
The Giorgio Foundation’s First Event: The Roast of Timmy C
We are proud to announce the first benefit event for The Giorgio Foundation:The Roast of Timmy C
This event will be taking place the evening of Saturday, October 18 at The Altoona UVA Club, a classic venue fitting the evening.
We are preparing for nearly 400 from our area to attend this event to toast — and roast — one of our region’s leaders in charity, Timmy Cassidy. It’s going to be a great evening for all involved, and all proceeds and sales will directly benefit NF1 research and The Giorgio Foundation.
We’ve included some information for the event, and we’d love to have you!
The Giorgio Foundation receives 501(c)3 non-profit status
After some period of waiting, we are proud to announce that as of May 13, 2014, The Giorgio Foundation has received 501(c)3 tax-exempt status from the Internal Revenue service!
Needless to say, this is a significant and necessary step forward for the Foundation and being able to secure donations to fuel clinical research of neurofibromatosis. We hope you will consider giving to this worthy cause, and know that 100% of your donation will go directly to the research of NF1.
We’ve included some information for the event, and we’d love to have you!