Parents of 5-year-old with rare genetic disorder Weidemann-Steiner Syndrome host fundraiser in honor of Rare Disease Day
SOMERSET, N.J., Feb. 26, 2020 /PRNewswire/ -- Five-year-old Parker Boyer, a Bridgewater resident recently diagnosed with the rare genetic disorder Weidemann-Steiner Syndrome, is the inspiration behind the Stripes for Parker benefit. The event, organized by parents Melissa White and Donny Boyer, will take place at Stage House Tavern on February 29th at 6:00pm.
Parker, who was first diagnosed with Growth Hormone Deficiency at 22 months old, would need to wait another three years and visit with countless specialists before receiving his official diagnoses of WSS, an extremely rare genetic disorder characterized by short stature, developmental delays, and a variety of other physical and developmental symptoms.
White and Boyer founded Rare Genes Movement to create a brighter future for their son and others like him by increasing awareness and raising funds to support research to uncover tangible treatment options.
"We are walking a road less traveled to assure the short-term support and long-term independence for our son. Advice from the many parents, medical professionals, and educators doesn't exist when you are talking about an extremely rare disorder. We will pave the road for Parker and those that may come after him by spreading awareness to get the necessary support for any child diagnosed with WSS to not just survive but thrive. What would you do if it were your son?" asked White.
Rare Disease Day, sponsored by the National Organization for Rare Disorders (NORD), takes place globally on the last day of February, a date that, because of leap year, is extremely rare itself, as a reminder of the challenges faced by those with rare diseases.
A disease is rare, according to the National Institutes of Health (NIH) when it affects fewer than 200,000 people in the US. Just 1,000 people are currently diagnosed with WSS worldwide. Nearly half of the 25 million Americans who live with a rare disease are children, and more than 90% of the more than 7,000 known rare disease lack FDA-approved treatments.
Those who would like to support Stripes for Parker but cannot attend the event, can donate on the Rare Genes Movement website.
Stripes for Parker guests are asked to "show their stripes" by wearing striped clothing to the event, which is open to the public and will include appetizers and a prize raffle. Optional donations will be collected at the door.
Stripes for Parker
Saturday, February 29th, 2020 6PM-10PM
Stage House Tavern
1719 Amwell Road
Somerset, NJ 08873
Event Facebook Page
For more information about Weidemann-Steiner Syndrome and Rare Genes Movement visit https://raregenesmovement.org/
About Rare Genes Movement:
Founded by parents Melissa White and Donny Boyer, Rare Genes Movement envisions a brighter future for those affected by a rare disorder. The organization seeks to make strides to be the voice of those fighting silently every day with a rare disease by funding research to find a viable treatment and by increasing awareness of the global impact of rare diseases.
Contact: Melissa White email@example.com
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SOURCE Rare Genes Movement