Rodef Shalom brothers fundraising for rare disease treatment

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Eli & Jacob Kulman
Jacob Kulman, 6, left, and Eli Kulman, 8. (Photo courtesy of Ali Kulman)

Two brothers will soon undergo lifesaving treatment, and a community effort underway aims to help cover the costs. Jacob Kulman, 6, and Eli Kulman, 8, were born with a rare life-threatening genetic disorder called IPEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked) syndrome. This has caused a variety of health problems.

The two live in Falls Church and belong to Temple Rodef Shalom along with their parents, Ali and Dave Kulman. In November, the boys are scheduled to undergo a bone marrow transplant. The surgery and follow-up appointments will require the family to relocate to Philadelphia for nine months. To help cover the family’s expenses, the nonprofit Children’s Organ Transplant Association aims to raise $100,000. Since the start of September, the nonprofit has hosted several fundraising events and raised some $56,000.


“Just to have some of our expenses covered, it just takes that weight off our shoulders,” Ali Kulman said. “The kids have been sick their whole life. So we’ve been dealing with financial debt for a long time. So at least we won’t get further into medical debt because of this procedure.”

An upcoming fundraiser titled “Jacob’s Birthday Bingo Bash” is set for 5 p.m. on Oct. 9. The virtual bingo night coincides with Jacob’s birthday. Participants are asked for a $5 donation per bingo card. Another fundraiser is set for Oct. 25. For $150, participants can sign up for a 15-minute photo portrait session.

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“It’s just been remarkable what our community and our family and friends and friends of friends have done,” Ali Kulman said. “We’ve been writing lots of thank you notes. We’re blown away by how many we’ve had to write.”

Those interested in donating can visit cota.org/campaigns/COTAforEandJ.


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@EricSchucht

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