NGF Community Blog

A Year of Growth at National Gaucher Foundation

At the age of four, Brian Berman, National Gaucher Foundation’s CEO, was diagnosed with type 1 Gaucher disease after suffering severe symptoms. The first person in the world to successfully receive enzyme replacement therapy for Gaucher disease, Mr. Berman’s personal journey from sick child to dynamic professional and married father of five has prepared him well for the leadership role he assumed in January 2016.

Under Mr. Berman’s leadership this past year, NGF added innovative programing, welcomed new staff, and ushered in a fresh vision for the community’s future. Mr. Berman set a dual focus for the organization: increasing services for Gaucher patients, and boosting efforts to educate the public about the disease.

Brian Berman’s Vision: Fast Diagnosis & Optimized Health

For decades, Mr. Berman has successfully worked with Gaucher specialists to create a personalized care plan and increase his own quality of life. So, when the staff of NGF surveyed the community early in 2016, he was surprised to learn that most members were not being seen by a Gaucher specialist. It took a new patient an average of five years to get a diagnosis, which he felt was “absurdly long.”

He realized that NGF had to increase educational efforts, so that patients would get diagnosed and treated promptly. This led to a full-scale campaign, including creating videos and a new website with traffic coming from many new community members. “It’s really starting to work. It’s starting to get the word out there,” he says. This was coupled with an effort to inform key physician groups, such as hematologists and pediatricians, about Gaucher.

Expanding NGF’s patient services, including its flagship program offering financial assistance to patients and their families, is another priority. “I’m proudest of our biggest programs, which are Care and Care+Plus. They help so many people and do such great work,” he says.

Take Charge of Your Health: Seeing a Gaucher Specialist

An NGF program launched last summer called the Optimal Health Initiative (OHI) encourages patients to see a Gaucher specialist and to take a proactive approach to their health. The concept comes straight from Mr. Berman’s life experience. After suffering throughout his childhood and teen years, he began a new health regimen during college, exercising regularly and taking a prescribed course of vitamins and minerals to balance the effects of Gaucher on his body. “A person needs to really understand how the disease is impacting their body, and to do that you need to be tested in a deep way by specialists,” says Mr. Berman.

With this vision as its guide, NGF has made key advances and had many proud moments in the past year.

NGF 2016: Major Highlights

  • The CARE Program offers Gaucher patients and their families aid with insurance premiums. The program has grown over the past year. Care+Plus, which helps with certain out-of-pocket expenses, was underused in the past. Thanks to new funding, it was able to help more families in 2016.
  • The Optimal Health Initiative (OHI) encourages Gaucher patients to see a specialist who can track their health and adjust treatment. Since its launch, the initiative has already benefited many veteran and new members. A patient-focused team is a key part of the program, so NGF has welcomed an optimal health advisor, a senior patient advocate and a medical liaison to the staff this past year.
  • NGF launched a campaign to educate the public and the medical community about Gaucher disease with a new website, a newsletter (Gaucher Today), and advertising.
  • This year, for Gaucher Awareness Month in October, NGF focused on increasing education and awareness in the general community. An NGF-produced video, Brian’s Story, went viral with almost two million unique views to date.
  • NGF teamed up with JScreen of Emory University in Atlanta to provide no-out-of-pocket-cost Genetic Carrier Screening for a host of diseases, including Gaucher.
  • Members of the NGF community met and shared with one another at a patient meeting in New York City featuring Dr. Pramod Kumar Mistry, a leading Gaucher expert.

Looking to the Future

In the coming year, NGF would like to reach out to young patients with type 1 Gaucher, and will continue its efforts to offer services to patients with type 2 and type 3 Gaucher, devastating forms of the disease. Key future goals include expanding the CARE programs and setting up a fellowship that specializes in Gaucher.

Whatever the future holds, NGF is headed in an exciting direction. “I’m proud of all the initiatives that we’ve executed,” says Mr. Berman, “but the thing I am most proud of is the clarity of purpose we now have.”

 

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