Glen Ridge family advocates for rare disease awareness

GLEN RIDGE, NJ — Rare Disease Day, a worldwide awareness event focusing on the 300 million individuals living with a rare disease, was first observed on Feb. 29, 2008, a leap year. This year, however, not being a leap year, it was observed on Monday, Feb. 28.

“It’s the rarest day,” Glen Ridge resident Julie Raskin said of Feb. 29 on the calendar. “That’s why it was chosen.” 

According to the Rare Disease Day organization, approximately 3.5 to 5.9 percent of the world’s population live with a rare disease.

“I know all this because my son, Benjamin, was born with a rare disease 25 years ago,” Raskin said in a Feb. 25 interview with The Glen Ridge Paper. “It changed a lot in my family, and I got involved with rare disease advocacy.”

Raskin’s son was born with congenital hyperinsulinism, a disease that causes dangerously low blood-glucose levels. This can lead to seizures, developmental delay, brain damage and even death. Subtle indications of hyperinsulinism, or HI, in infants include jitteriness, poor feeding and lethargy.

“It’s very hard to diagnose,” Raskin said. “Ten percent of normal infants have low blood sugar. Medical personnel need to be attentive to signs and symptoms of low blood sugar.

“My son needed surgery,” she continued. “His pancreas was removed because it overproduced insulin, but he still had HI and needed medicine. At 12, he became diabetic. He has low vision and some learning disabilities.”

She said it typically takes six to eight years for an individual to be diagnosed with a rare disease. For HI, diagnosis is critical at birth.

In 2005, Raskin founded Congenital Hyperinsulinism International, a nonprofit organization dedicated to improving the lives of children and adults living with the disease.

“We’re focusing on three things: raising awareness, supporting people with the condition and supporting research,” said Raskin, who is the executive director of CHI.

CHI has many programs supporting a group of about 1,900 people in 79 countries, according to Raskin. The organization also conducts surveys for individuals with HI. The purpose of the surveys is to provide information to researchers and clinicians. Last year, the organization provided genetic testing for 146 individuals in 31 countries. 

In 2020, CHI received $450,000 from the Chan Zuckerberg Initiative. Chan Zuckerberg is the wife of Mark Zuckerberg, the founder of Facebook. The initiative provides funding to organizations promoting beneficial social advances.

“We created a network with people who are specialists treating and researching HI,” Raskin said. “Patient organizations hold the keys to success.” 

The funding has helped CHI expand, Raskin said, “to hire staff to run conferences and meetings to create a massive agenda and prioritize research.”

CHI also provides travel expenses for HI families and has designated six hospitals as centers of health excellence. The selections are made with recommendations from a committee of health care providers. Of the current six designated hospitals, there are two each in the U.S., Germany and England. 

Benjamin Raskin-Gross attended Linden Avenue School and graduated from Glen Ridge High School, Class of 2014.

“He was in every play and sang in the chorus,” Julie Raskin said. “He had a private nurse until the third grade; she stayed with him in school. He always had support from the school nurses. They were great.”

Benjamin Raskin-Gross graduated from Landmark College, located in Putney, Vt., a school designed for students who learn differently, where he studied education and psychology. At the school’s 2017 commencement, he was awarded the Charles Drake Award, which goes “to a student who has inspired the Landmark College community through his or her personal qualities.”

Benjamin Raskin is currently working at The General Store at Cornerstone Montclair and preparing to advocate for HI awareness. His sister, Hannah, while at GRHS, organized the school’s first Rare Disease Day in 2012, the year she graduated from the school. Julie Raskin said that, without her husband, Mark Gross, she couldn’t have done the work. For more information, email [email protected].

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