Massachusetts Governor Names September Hydrocephalus Awareness Month

Hydrocephalus is the leading cause of brain surgery in children.

Every 15 minutes, a brain surgery is performed to treat hydrocephalus, a life-threatening brain disorder that affects over 1 million Americans. To raise awareness of the condition, Massachusetts Governor Charlie Baker has named September Hydrocephalus Awareness Month.

Jennifer Miles’ son, Sam, was born with hydrocephalus. He’s now 23 years old.

The Governor signed a Hydrocephalus Awareness Month proclamation on September 1st, at the request of Jennifer Miles and Sue Wiegers, two local moms who have children living with hydrocephalus.

Each year, one in every 770 babies develops hydrocephalus, a complex, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. While the condition is as common as Down’s Syndrome and more prevalent than spina bifida, the condition remains largely unheard of by the general public.

“There’s currently no cure for hydrocephalus and the only treatment requires brain surgery, often 20 or more surgeries in a person’s lifetime. Despite the prevalence of this condition, it seems few people know what it is,” said Jennifer Miles, whose 23-year-old son was born with hydrocephalus. “We’re so thankful that Governor Baker recognized September as Hydrocephalus Awareness Month because greater awareness can increase support and understanding of this condition, which will hopefully lead to greater funding for research.”

Miles and Wiegers met through their involvement with the Hydrocephalus Association, the largest nonprofit funder of hydrocephalus research in the United States. They both serve as volunteer leaders of the Hydrocephalus Association’s Boston Community Network, which provides support to local families impacted by hydrocephalus.

Throughout September, communities across the country will hold activities and WALKs to draw attention to this condition and the impact it has on families. Local individuals who want to get involved in Hydrocephalus Awareness Month can visit www.hydroassoc.org/HAM2021. In addition, the Hydrocephalus Association will hold a WALK to End Hydrocephalus in Medford, MA on Oct. 24th.

ABOUT THE HYDROCEPHALUS ASSOCIATION

Founded in 1983 by parents of children with hydrocephalus, the Hydrocephalus Association has grown to be the nation’s largest and most widely respected organization dedicated to hydrocephalus. The Hydrocephalus Association began funding research in 2009. Since then, HA has committed over $12 million to research, making it the largest nonprofit, non-governmental funder of hydrocephalus research in the U.S. For more information, visit http://www.hydroassoc.org or call (888) 598-3789.