June is National Lamb-Shaffer Syndrome Awareness Month. One organization is fundraising to raise awareness.
According to the National Library of Medicine, the Lamb-Shaffer syndrome is a neurodevelopmental disorder characterized by global development, speech and other delays along with mental disabilities caused by an insufficiency of the SOX5 gene in the 12th chromosome.
Raising A Rare held a fundraiser at St. Boniface Picnic Grove in Waterford for Lamb-Shaffer Syndrome.
Elizabeth Foor, an organizer of the fundraiser, said that she started getting involved once her son was diagnosed with Lamb-Shaffer Syndrome.
“About three years ago we searched for six years to find his diagnosis, and when we did, we found out there was at the time 150 people diagnosed within those three years. We found another 150 people, so we are about 300 people diagnosed in the world right now,” said Elizabeth Foor, Organizer of Fundraiser.
This disease is so rare that according to Lambshaffer.org, there are less than 550 people in the world diagnosed.
The whole idea for this fundraiser is to raise money for research and to bring awareness.
“The research that we do for Lamb-Shaffer Syndrome is essential for us to understand what will help our children live their best life, what therapies will help, how we can help them,” said Foor.
To raise money, the fundraiser offered a food truck, corn hole tournament, and many bingo prizes.
“There is Michael Kors purses. There is a Yeti cooler. There is all kinds of tents and camping items. Lots and lots of things in the Chinese auction as well,” said Melinda Kojanice, Event Helper.
Of the 300 participants, one person said that she loves supporting the cause.
“We love purse bingo and it’s been so long with this pandemic. We have to get out any chance we can,” said Foor.
Foor said that they hope to raise $5,000 that will all go to the Lamb-Shaffer Syndrome Organization. Foor also said that she hopes to make this an annual fundraiser.