Former Wash U student, Sheryl Grossman, Jewish activist who shed light on rare genetic disorder, dies at 46



(JTA) — Sheryl Grossman, an activist whose own rare disease fueled her advocacy for people with disabilities inside and beyond Jewish communities, died on Monday at 46.

Grossman was “surrounded by loving friends after a 17-year, determined struggle with multiple cancers,” according to her obituary.

Grossman’s cancers were associated with Bloom’s Syndrome, a rare genetic disorder characterized by many symptoms, including short stature, immune deficiency and an increased susceptibility to many cancers. (Grossman was 4-foot-3 and weighed 48 pounds.) Fewer than 300 people are listed in the Bloom’s Syndrome Registry, and about a quarter of them, like Grossman, have Ashkenazi Jewish ancestry.

Born in Chicago and raised in a community where she was one of few Jewish children, Grossman received a master’s degree in social work with a concentration in disability issues and advocacy from Washington University in St. Louis, where she had studied psychology and Jewish studies as an undergraduate.

“It doesn’t matter what country I’m in, or what I’m doing; somebody’s always going to turn around and stare,” she told The Source, the online University newspaper. “So, I better have a message.”

And she did. Grossman founded Bloom’s Connect, the only international support group for people with Bloom’s Syndrome, during her junior year at Washington University. It all started when she learned that the half-brother of a prominent St. Louis clergy member also had Bloom’s Syndrome. Together, they are two of the 268 known cases that have been diagnosed since the condition was first identified in 1954.

Sheryl Grossman and Bloom’s Connect

To Grossman, it became clear that a formal support system was needed for this small group and their families. The first few years were difficult, but Grossman found another three families, communicating by snail mail. In 2003, after the death of the first Bloomie (as they call themselves in Bloom’s Connect), Grossman threw herself into making the organization the international entity it is today.

For starters, Chabad campus Rabbi Hershey Novack helped Grossman secure a donated netbook and a domain name for Bloom’s Connect — With the aid of volunteers and a free Google website creator, Bloom’s Connect took off — within the first 24 hours, a Bloomie’s family member in Israel contacted the group.

The group’s first conference took place in 2008, bringing in 35 families from five countries, speaking four different languages. This happened on the typical social worker shoestring budget of approximately $4,500 with a donated venue and food. The conference landed them on the cover of the Riverfront Times, St. Louis’ alternative newspaper.

Sheryl Grossman accomplished so much

Grossman was a board member of Yad Hachazakah, the Jewish Disability Empowerment Center, and also worked in spaces that advocated for accessible workplaces and housing rights for people with disabilities. In the earliest days of the COVID-19 vaccine rollout, Grossman was outspoken about equitable vaccine distribution in Maryland.

“I don’t think anyone will ever know just how much work Sheryl did during the pandemic to help Jewish communities support their most vulnerable neighbors who were in the hospital or isolated at home with covid,” Shoshi Finkel, a law student who met Grossman when she was an intern at the American Association of People with Disabilities, wrote on Facebook. “She didn’t feel the need to share her accomplishments; that was never what the work was about for her.”

During the 2020 primary election in Maryland, Grossman spoke to The New York Times about the challenges she experienced while voting by mail, shedding light not only on accessibility but also on privacy issues in the American elections process and how they affect disabled people.

Tributes from friends, colleagues and supporters of Grossman’s work flooded social media after her death.

Eryn Star, an intern at the American Association of People with Disabilities, called Grossman “an incredible disabled Jewish activist who transformed disabled & Jewish spaces in St. Louis, Baltimore, & Washington DC.”

Grossman was an observant Jew who found herself drawn to Orthodoxy in college. She spoke frequently about inclusion in Jewish spaces and coached Jewish organizations and communities about how to adopt practices that would fully include people with disabilities.

“May the day come soon when Jews with disabilities don’t just celebrate one day, or one month, where the world acknowledges us, but rather that every day is Jewish Disabled Inclusion Day!” she said in a 2019 Jewish Telegraphic Agency story about Jewish Disability Awareness, Acceptance and Inclusion Month.

The funeral was held in Pikesville, Maryland. An American Sign Language interpreter signed the ceremony, and wore a clear mask for lip reading.

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