The Atlanta Jewish community came together to support a Bar Mitzvah fundraiser for Natanel Gold. In lieu of gifts for his special day, Natanel or “Nat” asked his guests to make donations to the ML4 Foundation in support of research to find a treatment for his sister Eden’s disease. In 2009, Eden was diagnosed with Mucolipidosis Type IV (ML4) at only 18-months old. ML4 is a preventable Jewish genetic disease that causes developmental delays, vision impairment and reduced life expectancy.
Nat was moved to raise money for the ML4 Foundation simply because his sister is his best friend. He said, “my sister is more important than any gift and I just had a vision of raising money to help find a treatment for her disease instead of getting gifts for my Bar Mitzvah. I had no idea how successful the fundraiser would be.”
When Nat let his parents know he wanted to have a Bar Mitzvah fundraiser, the family felt it was important to let everyone know that in addition to donating at natanel.ml4.org, the ML4 Foundation is listed as an approved charity through the Atlanta Jewish Foundation. The requests for grant distributions poured in! With the support of the Jewish community, Nat has raised almost $100,000 so far.
Natanel comes from a family with deep philanthropic roots in the Jewish Community. His parents, Caroline and Randy Gold are invested in Jewish continuity and have become two of the most impactful activists in the world on issues of Jewish genetic screening. Caroline and Randy opened a donor-advised fund with Atlanta Jewish Foundation Philanthropy early in their marriage because they wanted a tool to express their personal philanthropy. “It feels good to know our contributions will be met with the appropriate level of respect and will contribute to Jewish continuity, which is important to us,” Randy said.
Over the years, Randy sat on boards of Federation, JF&CS, Hillel, Kollel and others. He has prioritized community involvement just as his parents did before him. “Eden’s diagnosis brought all my experiences with philanthropy together. My involvement and volunteerism were training me for what has become my life’s focus,” Randy said.
Caroline and Randy realized the lack of information on genetic screening because they both were screened for some genetic diseases, but not comprehensively. “When Eden was diagnosed, we knew we had to solve the problem of Jewish genetic disease screening by creating something that didn’t exist. Dr. Paul Fernhoff (of blessed memory) diagnosed Eden and he helped us focus on ways to make screening more accessible to Jewish families,” Randy said.
Randy and Caroline founded JScreen to develop a comprehensive, accessible and affordable option to screen for Jewish genetic diseases. Today, JScreen tests for over 226 diseases common in Ashkenazi, Sephardi, Persian and Caucasian populations using a saliva-based test delivered through the mail with screening results communicated to patients by a genetic counselor.
Since 2011, Randy and Caroline have been the catalyst behind the ML4 Foundation to find a treatment for the disease that affects Eden. The Golds quickly realized a full time professional would be necessary to further their efforts, and with the help of generous seed donors in the Atlanta Jewish community they hired Dr. Rebecca Oberman as Executive Director to spearhead scientific research of the foundation.
While ML4 Foundation is searching for a cure, JScreen is focused on screening and prevention.
Natanel says he and Eden are very close. “I love to make her laugh and she loves when I sing her songs, and when we play ball together. She’s my best friend. Eden is awesome.” Eden requires daily hands-on care, as she doesn’t walk or talk and is experiencing vision loss. “It’s been challenging both physically and emotionally, but Eden is the happiest kid I’ve ever seen,” Randy said. “Caroline and I try to make sure all of our kids’ know how important they are and that we give each of them the attention they deserve. It’s a delicate balance every day.”
ML4’s current focus is a $12MM gene therapy research project at Harvard. “The process would replace defective gene with a corrected gene. This therapy has been performed successfully for other diseases and there are already positive indications of success for ML4. We hope Eden will receive the gene therapy treatment in the next 18-24 months.” Randy explained. If you would like to support research for ML4 or comprehensive testing for Jewish genetic diseases, your donor-advised fund is an easy tool.