Don't Confuse Monkeypox with This Medical Condition That Affects Over 250,000 People
Grandson inspired creation of The Giorgio Children's Foundation to raise awareness and fund medical research
DUNCANSVILLE, Pa., Sept. 8, 2022 /PRNewswire/ -- There is a growing trend on social media to publicly shame individuals with visible bumps and raised tumors, and immediately assume the individual has Monkeypox. However, that isn't true. Approximately 250,000 people worldwide have a condition call NF1, or Neurofibromatosis, a genetic condition which causes small tumors to grow on nerve endings, creating fleshy bumps on and underneath the skin.
Monkeypox is characterized by painful, hard or pus-filled lesions on the skin that actually scab and fall off. NF1 tumors do not fall off, and they are not contagious. They are, however, life altering. Some people with NF1 can be carpeted with hundreds of tumors on their face, torso, arms and legs. NF1 can also cause other distressing physical issues, such as skeletal and neurological complications. The changes in physical appearance caused by NF1 tumors can also be hugely damaging to a patient's mental health and confidence.
One family decided to take a unique approach to finding a cure for this genetic condition. Giorgio Borzellino seemed like a healthy baby at first, but his parents sensed something was wrong when he began to miss childhood milestones. At age 5, a neurologist finally diagnosed Giorgio with a rare condition, neurofibromatosis type 1 or NF1. Some children can lead full lives, but many suffer from uncontrolled tumors, learning difficulties and bone deformities. Giorgio's diagnosis empowered his grandfather Ben Stapelfeld to assemble a team of medical researchers and co-found The Giorgio Children's Foundation for NF1to fully fund their work. 100% of every dollar raised by this foundation is used for medical research. Since 2016, The Giorgio Children's Foundation has donated over $2.6 million to NF1 medical research.
The Foundation's medical research team consists of
Dr David Gutmann, MD, Ph.D, Director of Washington University School of Medicine .
Dr Lu Le, MD, Ph.D, Principal Investigator Of Cancer Biology and Professor in Dermatology, University of Texas-Southwestern.
Dr Sameer Agnihotri, Ph.D, Director of Brain Tumor Biology & Therapy Lab, University of Pittsburgh Medical Center.
"Neurofibromatis is probably the most common condition you have never heard of," said Dr. David Gutmann, director of the Neurofibromatosis Center at Washington University School of Medicine
A documentary on the impact of Giorgio's diagnosis and the medical research team's focus is available on the foundation's website: https://endnf1.org/.
"We partner with researchers that have a proven record of modeling NF1 and progressing existing research of the condition. We knew that if we had the funds, we could do something here," Stapelfeld said. "We really need the public's help in financing this medical research. The dream for Giorgio and others diagnosed with NF1 is to lead full and rewarding lives, and be free of these tumors."
Media Contact:
Erin Borzellino
917-287-9628
[email protected]
SOURCE The Giorgio Children's Foundation
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