Social Health, Community Building, and a Birthday Celebration
The Long family of Georgetown, South Carolina held their childrens’ annual Birthday Fundraising Celebration this month, raising $450 for the Hyper IgM Foundation. For many years now, Julie Long has been throwing fundraiser birthday parties for her kids, Quin, Jack, and Luke, who all have birthdays around the same time. “I never wanted any of our friends or family members to have to buy three gifts at once, so we started the idea of fundraising parties,” Julie says. This year the Long family chose the Hyper IgM Foundation as the beneficiary of their fundraiser despite never meeting a family with Hyper IgM Syndrome. They gave out flyers about Hyper IgM Syndrome, and raised awareness at the party and on social media, educating their friends and family about this rare disease. Julie writes on Facebook “I am thankful for so many who listened, read and are now educated on Hyper IgM and the amazing foundation Akiva and Amanda head up for their remarkable son and so many others affected.“
Akiva Zablocki, founder of the Hyper IgM Foundation, and Julie Long have known each other for 11 years despite never meeting in person. It was a different rare disease that brought Julie and Akiva together in 2006. “I was just diagnosed with a Juvenile pilocytic astrocytoma (JPA) brain tumor in my brainstem, had surgery to remove it, and was searching online for others like me,” Akiva says. Akiva than found an online support group run by Julie Long for the JPA type tumor. Julie’s daughter, Skyla had been diagnosed with the same brain tumor and Julie managed the group Akiva joined.
“Arguably, joining Julie’s brain tumor online group in 2006 could be seen as the catalyst and inspiration to my personal involvement and creation of many other disease-specific groups over the years,” Akiva states. Akiva manages and admins many online support group for brain tumor or other rare diseases, like Hyper IgM Syndrome. “Julie’s group taught me the value of social media in helping empower patients to make the best healthcare decisions when facing a rare disease,” Akiva adds. Akiva went on to create communities aimed at empowering patients and later would be the founder of the Hyper IgM Foundation and start the patient’s support network for this rare disease.
“When my son was diagnosed with Hyper IgM Syndrome, a 1 in-a-million rare disease, I knew right away what I needed to do. Having been active in creating communities for brain tumor and cancer patients it was natural for me to work on connecting patients with Hyper IgM,” Akiva says.
On October 7th, friends and family of Julie’s kids gathered to celebrate three of her childrens’ joint birthday party. They listened, read and are now educated on Hyper IgM Syndrome and heard from Julie about Akiva’s son, Idan, and his journey for a cure. At the end of the day, Julie’s kids raised $450 to be matched by her generous employer, Evans Moore, LLC, to help fund the Hyper IgM Foundation’s mission and the search for a cure.