Community Rallies Together in Saying “No More Brain Surgery”
Patients, family members and local businesses will raise awareness and critical funds for a brain condition that has no cure and that affects more than 1 million Americans.
CINCINNATI, OHIO, OCTOBER 1, 2022 – The Hydrocephalus Association invites media members to attend the Greater Cincinnati WALK to End Hydrocephalus. Saturday October 1, 2022, at T.M. Berry International Friendship Park. The Knapke family as well as other families affected by hydrocephalus will be available for interviews.
Imagine being 21 years old and having had over 140 brain surgeries. This is the reality for some living with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Nearly 200 people representing patients, family members, friends, and local businesses are set to gather at International Friendship Park to raise awareness and critical funds for hydrocephalus Participants hope to raise more than $50,000 to help find a cure for hydrocephalus and improve treatment options.
“I’m walking for my son, who was born with hydrocephalus caused by an L1CAM gene mutation. This warrior, with the most positive personality, had a shunt placed in his brain on day seven of life. He has put in thousands of hours of physical, occupational, and speech therapy across the nation since birth on a mission to defy the doctor’s doomed outlook of ‘never walking, talking, or eating on his own’. As parents, we live in a constant state of astonishment at his progress and preparedness for brain surgery because we never know – is he fussy today because he’s a five-year-old or is his shunt malfunctioning?!” said Mike Knapke, a local volunteer who helped organized the WALK.
The WALK will raise funds to support the Hydrocephalus Association’s (HA) critical research initiatives, education and outreach programs. HA began funding research in 2009. Since then, HA has committed over $13 million to research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the world. The Cincinnati WALK to End Hydrocephalus is one of more than 40 WALK events held across the country that are all 100% volunteer-led by dedicated members of the hydrocephalus community.
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. The primary treatment for hydrocephalus is the insertion of a device called a shunt –a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries throughout their lifetime.
“After realizing our son’s shunt could malfunction at any time, my wife and I determined that we could not just sit in the medical world’s doom and gloom without trying to do something. In planning this event, we not only aim to help find a cure for hydrocephalus but are passionate in bringing together the local community to build a support group of families affected by hydrocephalus and experiencing similar journeys. Our son’s diagnosis, in utero, was the most isolating news we had ever received. We felt stranded and alone in our battle against hydrocephalus, a condition few had heard of let alone relate to, until we found the Hydrocephalus Association. We never want a family to feel that level of isolation.”, said Mike Knapke.
There is still time to donate and/or register to participate as a team or an individual walker by visiting www.hydroassoc.org/cincinnatiwalk or by calling the HA national office at 888-598-3789 Ext. 113 or emailing walk@hydroassoc.org.
Local sponsors for the 2022 Cincinnati WALK to End Hydrocephalus include Nisbet Brower, Rivertown Guns, Emerald Foundation, Richard L. Jackson D.D.S., John & Leslie Krehbiel, Brixey & Meyer, Community Outreach Foundation, American Homeland Title Community Foundation, Aspire Therapy Services, Cinfed Credit Union, Satuit Technologies, St. Elizabeth Healthcare, and John Wood Insurance Agency. National sponsors are Medtronic, Codman Specialty Surgery, Permanente Medicine Mid-Atlantic Permanente Medical Group, Locust Cider, CereVasc, and HyperFine.
About the Hydrocephalus Association:
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus. Since 2009, HA has invested over $13 million in research, making it the largest non-profit and non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.