Rep. Rodney Frelinghuysen met with eleven-year-old Montclair resident Claudette Johnson today to about increased funding for Scleroderma, a rare, aggressive and often debilitating autoimmune disease she suffers from. Johnson and her mother, Christina Loccke, were in Washington today to help educate legislators about how effective early diagnosis and treatment can keep a child well, and free of the disabilities so often caused by the disease.
They are seeking support for legislation that could push the National Institute of Health to improve the coordination and advancement of research on the disease. Claudette as nine when concrete-like patches suddenly grew on her upper body. She was diagnosed early and treated with high-dose steroid and low-dose chemotherapy. According to her mother, most children with the disease go undiagnosed for years.
Loccke said that Frelinghuysen “dedicated quite a bit of time to personally hear our story and discuss the Scleroderma bill, as well as out need for increased NIH funding.”
They also met with staffers for U.S. Senators Bob Menendez and Cory Booker.
Hackensack Children’s Hospital is one of the few pediatric scleroderma treatment centers in the country.