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On Tuesday, the school community raised awareness on National Rare Disease Day, and raised money to benefit a local non-profit – Rare is Beautiful.
“The participation was amazing,” said Denise Ingui, a secretary at 16th Avenue School. “It makes you emotional.
It is like you are smiling but you are crying too at the same time.
Ingui and her husband Sal created Rare is Beautiful after their teenage daughter Dee Dee was diagnosed with Peutz-Jeghers Syndrome in 2015.
The disease -- that affects the gene that suppresses tumor growth and greatly increases the risk of cancer when patients aren’t monitored – is so rare that just about one in 300,000 people have it.
The money raised will help the Ingui family carry out the mission of their organization: to spread awareness about Peutz-Jeghers Syndrome, financially assist families who have children already stricken with cancer, and ultimately, help find a cure.
Students and staff each donated $1 to wear black and white. Rare is Beautiful bracelets were also sold earlier in the week for $1 each.
“I am so thankful to the school district for allowing us to have this fundraiser,” Ingui said.
Rare is Beautiful is holding its first 5K Run/Walk and Family Fun Day on Sunday, April 2, at Elmwood Park High School. To spread awareness about the event, students from Elmwood Park Memorial High School jumped on a viral internet sensation and created a mannequin challenge save-the-date video.
The organization is also teaming up with another local non-profit – the Let Them Be Little X2 Foundation – to host a breakfast fundraiser on Sunday, March 5 from 8 to 10 a.m. The event will be held at Applebee’s, 186 Passaic St. in Garfield, and proceeds will help support children with rare diseases and their families.
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