Wanted: Partners in the Journey

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DawncropI’m still reeling with excitement generated by a very special event held on October 10th in New York City. I have to share, and I hope after reading this blog that you, too, will be equally excited.

Called the Hydrocephalus Association First Annual Vision Dinner, the event was hosted by two extraordinarily generous benefactors: Craig and Vicki Brown. It would be an understatement to say that the Browns have been personally affected by hydrocephalus: both their son, Jeff, and their nephew, Wells, have the condition. What this remarkable couple has done has been to use their personal experience with hydrocephalus, and their dream for a cure, to establish a one-of-a-kind function designed to raise awareness in a way that HA has never done before.

More than a majority of the participants at the dinner were individuals who had never been exposed to what life with hydrocephalus means. Over 140 in total, the participants came from many different fields of endeavor; the only thing they had in common was that they knew someone who is either a hydrocephalus patient or is the family member of a hydrocephalus patient. Despite that personal experience, most of the attendees understood very little about the challenges of living with hydrocephalus. That is, until the night of the dinner.

As part of the program, Craig Brown bravely shared his family’s story as well as his hope for better treatments, prevention, and a cure. Others shared as well – Paul Gross talked about his son, William, who has served as an inspiration for his work in helping to found the Hydrocephalus Clinical Research Network and to initiate the Hydrocephalus Association’s support of research. Dr. Ben Warf with Boston Children’s Hospital talked about the global health burden caused by hydrocephalus that has prompted him to develop a new surgical technique which pairs endoscopic third ventriculostomy with choroid plexus cauterization, eliminating the need for a shunt in infants who are viable candidates. Vision Awards were presented to HA Founders Russell and Emily Fudge (“Vision Award for Leadership”); Pediatric Neurosurgeon Marion Walker (“Vision Award for Service”); and Entrepreneur Paul Gross (“Vision Award for Inspiration”). The HA’s newest video about living with hydrocephalus was debuted, thanks to underwriting and production support from Emmy-award winning producer Nikki Silver and her family.

Anyone attending the dinner would be excited and inspired by what they heard. I can’t tell you how many times I heard from people in the audience just how little they understood about hydrocephalus before the dinner, and how compelling the need was for more research.

What was most inspiring to me, however, was not the speeches or personal stories shared that night. What was most compelling to me was the commitment and dedication the Browns showed to the endeavor. Now, I think I know them well enough to know that they are not the type of people to simply complain about the state of affairs without making an effort to improve things. Yet, I have been awe-struck by their enthusiasm and devotion to the task. You see, they did much more than simply provide the funding for the dinner. Their willingness to start this endeavor – and to continue it next year as well – has meant many painstaking hours of hundreds of details, all attended to personally, especially by Vicki.

The effects of the dinner are already being felt: new donors are coming forward and new volunteers are being engaged. Most exciting: others are using the example set by the Browns and coming up with ways that they, too, can engage newcomers in the cause. In fact, Mike Schwab in Portland, Oregon, held a reception in order to make the same kind of introduction to hydrocephalus to potential new supporters there. Another major donor has also promised to hold an introductory event at their home. The actual format of the events may vary, depending upon the talents, opportunities and resources at the volunteer’s fingertips. Regardless of the format, the end goal remains the same: raising awareness.

The motto for the Vision Dinner was A Time for Awareness, The Hope for a Cure. With partners like the Browns, and the new friends we made at the Vision Dinner, we are well on our way!

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