HAZLET Striving to raise awareness for children affected by PCDH19 epilepsy, the PCDH19 Alliance will host its first “Laps For Ladybugs” fundraising walk.
The PCDH19 Alliance was founded by three parents of girls affected by PCDH19 epilepsy in an effort to support ongoing research into the debilitating disorder. The alliance is an all volunteer run organization, according to information provided by the organization.
“My job title is simply a mom who has been terrified by the horror of PCDH19 epilepsy and will help the PCDH19 Alliance find new and creative ways to fundraise for the rest of my life. My children are my heart and Arielle, who is our youngest daughter, is stricken with this disorder. My family will never stop giving up hope for better treatment and a cure,” member of the PCDH19 Alliance Leslie Ponzo said.
The little over a mile walk will take place at 10 a.m. to 12 p.m., on Nov. 4, at Veterans Memorial Park, located at 1776 Union Ave.
Tickets are $30 per adult and children are free. Registration for the walk is going to be at 9-10 a.m.
During the entire event there is going to be a DJ. Immediately following the walk there will be: a local magician, Tom Durnin, a zoo will be provided by Brian Lark who travels with animals and entertains kids, a piñata, a corn hole toss, horse shoes and dancing. Margot Gough will involve children and adults who want to partake in some dancing at 11:30 a.m., according to Ponzo.
PCDH19 is a genetic epilepsy caused by a mutation of the PCDH19 gene on the X chromosome, affecting mostly females. As this gene was not isolated until 2008, researchers are still working to understand the connection between the gene and the wide spectrum of symptoms for which PCDH19 epilepsy is known, according to information provided by the organization.
The organization was created in 2012, according to Ponzo.
Ponzo said that she and her husband got involved with the organization after their daughter, Arielle, was diagnosed with PCDH19 epilepsy in April of 2016.
“Well, it all started with a phone conversation between me and Julie Walters, our fearless PCDH19 Alliance president. I had reached out to her stating I wanted to become more involved and raise funds for our kids and research. She then said she had been thinking of planning our first PCDH19 Alliance walk and if I would be interested in leading the New Jersey location. My husband and I without hesitation said ‘yes,'” Ponzo said.
PCDH19 Alliance walk will take place in New Jersey and California, according to Ponzo.
“We have chosen a walk as a new way to fundraise for our alliance being we have never tried it before and thought, ‘what a fun and exciting new venture to try.’ Julie and I are hoping this can be a new fundraising roadmap for the PCDH19 Alliance and encourage other PCDH19 families to ‘get up and walk’ in their neighborhoods,” Ponzo said.
Ponzo said that she loves and appreciates her daughter, Walters, her family, her friends, and the other fellow PCDH19 families who have helped support the organization’s first fundraising walk.
“I love our sponsors and donators who care about our fundraiser and have donated their funds, money and goods to help us. I love working with the Hazlet township and meeting more people within our community and building relationships for this fundraising venture,” Ponzo said.
She said the ladybug is the symbol of the organization.
To register for the walk visit www.crowdrise.com/LapsforLadybugs.
For more information about PCDH19 Alliance visit www.pcdh19info.org.
Contact Vashti Harris at vharris@newspapermediagroup.com.
