David Berman was abruptly introduced to myotonic dystrophy when his wife Sarah gave birth to their daughter Zoé in December 2007. Doctors were immediately concerned with her floppiness and inability to feed. For the first few days of her life, Zoé was fed with formula in a tiny tube that ran along one of her parents’ fingers and into her mouth. This still required enormous effort by Zoé, and the doctors feared that feeding might be burning more calories than it provided.

Zoé would spend the first weeks of her life in the hospital’s neonatal intensive care unit (NICU). A physician with a keen eye suspected the newborn might have myotonic dystrophy and assessed Sarah’s grip for signs of the disease. Genetic testing confirmed that both Sarah and Zoé had DM1.

Sarah, then 35, had been asymptomatic until around the time of her pregnancy, but in retrospect, there were small signs that went unnoticed, such as neck weakness and difficulty opening water bottles. The diagnosis would lead to the testing and diagnosis of other members of Sarah’s family. Her father and two uncles tested positive, though none had any symptoms. Testing also confirmed that one of Sarah’s brothers, who had challenges throughout his life, had DM, as did a cousin, who developed symptoms later.

The Bermans discovered MDF soon after Zoé’s birth and have turned to it as an ongoing resource. They have become increasingly involved with MDF over the years and, this summer, David became the newest member of the MDF Board of Directors.

Experienced Business Professional

Born in New York City and raised in Westchester County, David, 50, earned his undergraduate degree in political science and history from Emory University in Atlanta. After graduating from college, David worked in Switzerland and Hong Kong, where he traded chemical commodities.

He went on to Columbia University, where he earned an MBA. He then worked at Taro, a specialty pharmaceutical company, for seven years. He joined Impax Labs as vice president of business development and moved to the San Francisco Bay Area in 2008, and has spent the last decade focused on product licensing and mergers and acquisitions.

“I’m still a newcomer to the MDF board, but I’m hoping my background in the pharmaceutical space can be a benefit to the organization,” said David. “Also, living with one person who has the congenital form of the disease and one person with adult-onset may allow me to bring perspectives to the board that others don’t have.”

Living with Myotonic Dystrophy

Today, Sarah and Zoé are doing relatively well. Zoé is a fifth grader in public school and spends most of her time in the general education classroom. She has a dedicated aide and also sees physical, occupational, and speech therapists. Her articulation is impaired by the DM-related weakness of her facial muscles, but her work with a speech therapist over the years has helped. She loves theater and participates in one or two plays a year. She also enjoys horseback riding, which started as a form of therapy, and swimming.

As for Sarah, her symptoms are gradually getting worse. Her muscle tone continues to deteriorate and her walking has become increasingly compromised. She also experiences other DM-related problems, such as chronic fatigue, daytime sleepiness, trouble swallowing, and coughing in the middle of the night. She used to teach junior high and high school five days a week, but she now has a part-time position teaching preschoolers, because the disease has forced her to cut back on her professional life.

Involvement with MDF

When Sarah and Zoé were first diagnosed, the family had never heard of myotonic dystrophy. They connected with MDF to educate themselves on living with DM and gain comfort through speaking with others who were on the same journey.

Sarah began volunteering with the organization, and since 2009 she has chronicled her daughter’s life with DM through photographs and posts in an online blog that she updates from time to time. The blog has connected her to a broader DM patient community from around the world.

David’s involvement with MDF continues to grow. He attended the 2017 MDF Annual Conference with Sarah last year and has been sharing his thoughts with members of the board and management team over the years. David joined the 2018 MDF Leadership Summit, a two-day strategic planning offsite MDF holds every January, where he participated in discussions and learned a lot about MDF’s future plans and priorities.

“It was an extremely inspirational weekend,” he said of the strategic offsite. “I learned a lot more about the organization and the initiatives underway.” This included learning about MDF’s successes with advocacy and fundraising, as well as its efforts to facilitate drug development.

David also reflected on being part of a close-knit group of people with shared experiences related to DM. He said, “Even though it’s a multisystemic disease that impacts everyone differently, there are remarkable similarities that foster an immediate connection.”

He’s looking forward to contributing to the efforts of an organization that has become an integral part of his family’s life and an important source of information and support.

“MDF has meant a lot to us. It’s a place where early on we could see we were not alone with the disease,” said David. “The community has been a great place to ask questions and learn from others, and to share our experiences and help wherever we can.”