November 14, 2013 at 10:06 AM
LIVINGSTION, NJ –An all-day fundraiser for 7-year-old Livingston resident, Allie Grossbard, is being held at Swede’s Frozen Yogurt, at 45 South Livingston Ave., on Thursday, Nov. 14. Proceeds from the event will benefit Allie’s Foundation.
This past spring, Allie Grossbard, a student at Collins School, was diagnosed with Gaucher (go-shay) Type 1, a rare genetic disorder that requires costly, twice-monthly IV infusions, for life. The disease comes from a specific Lysosome enzyme deficiency in the body, which is caused by a genetic mutation from both parents. This recessive disease is the most prevalent of 50 Lysosomal Storage Disorders (LSD), with an incidence of about one in 20,000 live births.
Lysosomes are the cell's waste disposal system. They process unwanted material into substances that the cells can utilize. When the Lysosomes don’t function normally, excess products destined for breakdown and recycling are stored in the cells causing illness. The disease course can be range from no outward symptoms to skeletal problems, liver or spleen damage, bleeding, severe disability and death.
Type 1 Gaucher Disease occurs worldwide in all populations, but is most prevalent in the Ashkenazi Jewish population (the Jews of Eastern European ancestry). Within this population, Type 1 Gaucher Disease occurs at a rate of 1 in 450 live births, and is the most common genetically-based disease affecting Jewish people, with a carrier frequency of 1 in 10.
“After many years of infertility, my husband and I knew we each carried the recessive gene when we were screened for pregnancy, but with only a 25 percent chance of having a child with the disease and a known treatment, we took the chance of having children,” said Allie’s mom Elisa Grossbard. “So, when a routine medical exam detected an enlarged spleen, which is a symptom of Gaucher Disease, my mind went immediately to the disease. The benefit of this was early detection and treatment, which does not happen for all people with the illness.”
The Grossbards have two other children who do not have the disease.
When Allie found out she was sick, rather than keeping it a secret, she wanted to tell all of her friends at school what she was going through and raise awareness for the disease. With the help of her mom, and a representative from Genzyme, the pharmaceutical company providing treatment for Allie, the tyke organized an informational class event chock full of a discussion and video.
“She was beaming,” said mom. “The school nurse and principal came to the session to show their support. The principal, John N. Leister, said that Allie was like a talk show host.”
“I of course reached out to the parents in the class ahead of time to let them know about Allie’s illness and desire to share information about it with the class,” added Grossbard.
To further raise awareness for the disease, Allie, who knew that her favorite dessert spot, Swede’s Frozen Yogurt, had recently held an Ollie Palooza fundraiser for a fellow classmate with muscular dystrophy, asked her mom to approach owner, David Feldman, of Livingston, about holding a fundraiser for her. David agreed and the family decided to hold the event on Nov. 14. The Grossbard family will be on hand at the event throughout the day to greet guests, answer questions and provide information on the disease and Allie’s Foundation.
“I have four children, and know how precious children are,” said Feldman. “How could I not help out Allie and her family? I am honored to have been asked to help out and look forward to the fundraiser. I hope we have a huge turnout and raise a lot of money for Allie.”
“Allie is an amazing child, and I feel confident that she will be able to handle what comes,” said Grossbard. “I am really proud that she has taken a proactive approach to her disease and marvel at how well she is handling the treatments.”
“We are very excited for the fundraiser and grateful to Swede’s for hosting the event,” added Grossbard. “While we are thankful that there is a treatment for Allie, it is very costly, and we are equally grateful to everyone who will be participating in Allie’s Fundraiser.”