Sheryl Grossman, AB ’98, MSW ’00, has Bloom’s Syndrome, a rare genetic condition characterized by short stature and a predisposition to multiple secondary conditions including cancers. However, don’t be fooled as her 4 feet, 3 inches belie the dynamo housed within.
“It doesn’t matter what country I’m in, or what I’m doing; somebody’s always going to turn around and stare,” she says. “So, I better have a message.”
And she does. 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.
It is not surprising that Grossman had never met another person with Bloom’s Syndrome, since there are so few diagnosed cases. Plus, those who have Bloom’s have a greatly shortened life expectancy (just 25 years for females, according to the Bloom’s Syndrome Registry).
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 — www.bloomsconnect.org. 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.
“We established Bloom’s Connect to educate the public, the medical community and others with Bloom’s Syndrome,” Grossman says. The website contains information and resources often not available through other means. “We may be thousands of miles apart and come from all types of backgrounds, but because of several online support forums, we always have access to others for support,” she says.
Such an organization would have benefited Grossman while she was a student. At the time, she didn’t know enough to ask for lowered light switches and showerheads. Other modifications can be as simple as providing a footstool for the student whose dangling legs may fall asleep and using fluorescent light filters to block harmful UV rays.
Bloom’s Connect is also one of the first places that parents will visit when their child receives a diagnosis of Bloom’s Syndrome. “It is so important for parents to know that their child can have a fulfilling adult life,” she says.
Grossman emphasizes that moments of goggling don’t get her down. Rather, she uses her skills as a social worker to transform them into opportunities to teach others about acceptance and tolerance.
“The most difficult thing about having Bloom’s Syndrome are the attitudes and assumptions of others — because of my size and high-pitched voice, I’m often thought to lack intelligence,” she says.
Approximately 90–100 families are active in Bloom’s Connect. 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.
Grossman is busy planning the next conference, which she hopes will offer many more families the chance to meet each other for the first time. “This was the most important part of our last conference,” she says. “People are clamoring for it again. The trick is bringing in families from six different countries, speaking five different languages all on a similar shoestring budget.”
Her continuing goals for the organization include educating the public and the medical community about Bloom’s Syndrome and connecting Bloomies and their families with each other. In addition, she dreams of making Bloom’s Connect its own 501(c)(3) and running the organization as her full-time job.
And Grossman is just the right person to make it happen.