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Family Driven Development of Treatments for Rare Pediatric Neurological Diseases
Published article in the prestigious Clinical Pharmacology and Therapeutics Journal , titled “Family Driven Development of Treatments for Rare Pediatric Neurological Diseases https://onlinelibrary.wiley.com/share/author/CYASAK6VRRDKH23SJNZB?target=10.1002/cpt.2507
The Year in Review summary 2021
The Year in Review summary 12/16/21. https://conta.cc/31S4v9J
22nd annual sweetness laughter gala
The Sweetness and Laugher Gala took place on Facebook Live. Download the program, and click the Facebook link to replay the Live event. Lastly Click below to see the Gala and “See the Light” Awards Video. Replay the FB Live Event Watch the “See The Light” Awards Video Download The Program “See the Light” Awards …
2021 sweetness and laughter virtual gala series
The Virtual Gala Series included fast-paced multimedia engagements over the course of a few months, which included updates in research and treatments, genetic screening, and nursing student education. Learn more and watch the inspiring personal stories, the “See the Light” Award honorees, and light-hearted entertainment in the links below! Third Mini Event: …
Evie
To lose her first child, Evie, to a fatal genetic disease of the brain was devastating to a South Florida mom who had recently relocated from New York. To learn that she was at high risk for carrying the disease, and learning that her doctor simply failed to inform her, made matters worse. And finally, …
Nicholas
Nicholas was unable to produce critical brain matter due to Canavan Disease. The only chance he had for survival was successful experimental gene therapy. Unfortunately, this therapy was still in the early stages of research and not available in South Florida when Nicholas was fighting his battle, requiring the family to travel elsewhere to get …
Mathew
Mathew was born to Kevin and Lisajane Romer in South Florida in 1995 with a fatal genetic disease – Tay-Sachs – despite both parents being tested for the occurrence of the defective gene and being told that they were not carriers. From the time their eldest son, Mathew, was 6 months old and stopped developing …
Brooke
Brooke was born in 1996 with Tay-Sachs disease and while her life here on Earth was short, she empowered her family to carry on the mission of providing support to affected families throughout their journey. Brooke’s mother, Monica Gettleman’s impact to The Mathew Forbes Romer Foundation and the genetic diseases community overall is incomparable. She …
William
Back in 2014, the Marquardt family, one of the Nursing Pilot Program’s biggest supporters, was scheduled to be one of the initial families participating in the Foundation’s Nursing Pilot Program with FAU. Unfortunately, their son William lost his 8 and one-half year fight with a genetic disease GM-1 just days before the anticipated start date …