Denver, Feb. 27, 2023 (GLOBE NEWSWIRE) -- Global Down Syndrome Foundation (GLOBAL) announced today that it has received a transformative grant from The Salah Foundation. The grant will fund three ambitious areas: (1) the purchase and application of important diagnostic and treatment equipment that will stop the progression of keratoconus in patients with Down syndrome, (2) a first-in-kind series of workshops for professionals and families that raise awareness and understanding related to eye and vision issues in children and adults with Down syndrome, and (3) a white paper that will inform the first medical care guidelines for eye issues and vision loss in adults with Down syndrome.
Keratoconus is an underdiagnosed, progressive eye disease where the front layer of the eye (the cornea) thins and weakens over time causing a cone-like bulge. The condition, if left untreated, can lead to serious vision problems including blindness. While keratoconus is not reversible, earlier detection can result in proactive treatment to halt the progression of the condition and can ultimately save the patient’s vision.
It is estimated that less than 2% of the general population suffers from keratoconus versus up to 30% in the Down syndrome population.
This generous Salah grant will underwrite a Pentacam Comprehensive Eye Scanner and Cross-Linking System. The Pentacam is an important piece of equipment that provides more precise measurements of the central cornea as compared to any other ocular measurement instrument. This improves the ability of the eye clinician to diagnose ocular conditions, especially keratoconus. The Cross-Linking System is the equipment used to perform corneal cross-linking, a procedure using riboflavin and UV light to strengthen the cornea. Cross-linking is the only treatment proven to halt the progression of keratoconus and is a fairly new procedure in the U.S. that received FDA approval in 2016.
Dr. Emily McCourt, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado, and Dr. Michael Puente, MD, pediatric ophthalmologist at the University of Colorado School of Medicine and Children’s Hospital Colorado, have treated over 500 patients with Down syndrome over the last several years, as referrals from the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.
“I can tell you from first-hand experience the Pentacam and the cross-linking procedure can and will save the vision for individuals with Down syndrome,” says Dr. McCourt. “Dr. Puente and I are excited to work with GLOBAL and fulfill our ambitious goals associated with this grant.”
Dr. McCourt and Dr. Puente will be organizing the workshops and writing the white paper that will inform future guidelines on vision and eye care for adults with Down syndrome. Dr. Puente is the Director of Medical Student Education in Ophthalmology at the University of Colorado School of Medicine and his interests and expertise also include eye care for adults with intellectual disabilities.
“Our meetings on this project with GLOBAL have been so exciting. I believe the results will have an extraordinary impact on the lives of hundreds of individuals with Down syndrome suffering from keratoconus and other eye issues. I cannot stress enough how meaningful that is to the patients and their families,” adds Dr. Puente.
“Having our 18-year-old daughter get the cross-linking procedure was life-changing,” says Jennifer Revesz. “Lauren is a wonderful daughter and sibling who happens to have a dual diagnosis of Down syndrome and Autism. To add blindness to her challenges is really unthinkable. We are so grateful to Dr. McCourt for helping us to get cross-linked and preserving Lauren’s vision.”
“Generous support from The Salah Foundation has allowed us to provide life-changing resources to the amazing people with Down syndrome we serve,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Noreen, Fred, Megan, and the whole Salah family have long believed in our work, and they truly care about our children and adults with Down syndrome. With their help we are delivering on our mission to elongate life and improve outcomes – we are so grateful!”
“We applaud the Global Down Syndrome Foundation’s work in addressing the often overlooked population of adults with Down syndrome,” says Noreen Salah Burpee, Executive Director of The Salah Foundation. “The Salah Foundation is rigorous in its grant making and we anticipate the results of this grant to inform improved, evidence-based eye care and outcomes for this community .”
The Salah Foundation has been a long-time supporter of GLOBAL, having previously provided a lead gift of $1 million for its state-of-the-art education center, as well as additional generous grants associated with life skills and independence for adults with Down syndrome.
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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World TM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).
About The Salah Foundation
The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org.
