Inspiration All Around

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By Laurene McKillop, PhD

Bright, warm sunshine greeted participants in the 11th  National Conference on Hydrocephalus, as they walked for the cause on Sunday morning, June 20.  It was a glorious end to a thrilling event.  Where else can one have gone to see two brain surgeries performed live in two days?  Over the coming week we’ll highlight some of the exciting moments and sessions of the conference right here on our blog.

picture of the walk to wade oval

Walking to Wade Oval

The conference WALK culminated in Wade Oval, a grassy park surrounded by some of Cleveland’s most beautiful museums, as well as the Arboretum.  There, weary walkers rested and cooled off, while a group of young researchers, funded by the Hydrocephalus Association, described their exciting and groundbreaking research.  Following that, a panel of individuals with hydrocephalus, mediated by Dr. Mike Williams, member of the Hydrocephalus Association Medical Advisory Board, described some of the challenges they face as part of everyday life: dozens of surgeries, difficulty finding appropriate care, and the stress borne of never knowing when a shunt may fail.

Showing great insight into the underlying character of those living with hydrocephalus, Dr. Williams concluded the session by asking participants what positive impact they could attribute to living with hydrocephalus.  Their answers were stunning.

“I have learned patience,” said one.

“I take one day at a time and appreciate it,” remarked another.

a picture of our panel of speakers at the closing ceremony

Ourt intergenerational panel holds forth.

“I have learned not to fear,” said a third.

All of these admirable individuals agreed that they would willingly take part in a clinical trial, not so much because they expect a cure for themselves, but because they want to help future generations.

It is a rare gift to know that your work matters. And it is equally rare to know that you are sitting among the finest of the human species, enjoying the sun on a lovely Sunday morning.  Yet that’s what each and every one of us got to share during our three days in Cleveland.  I am grateful to you all.

3 Comments for : Inspiration All Around
    • Lara
    • September 19, 2010
    Reply

    Hi Laurene,

    We weren’t able to make it this year; however, we’ve heard that the conference was a tremendous success!

    You mention clinical trials. I understand that in March ‘10, the HCRN, whose mission is to improve the treatments and outcomes for children suffering from hydrocephalus, received $1 MM in NIH funding (“challenge grant”).

    I know that in the past the NIH has given far less than this amount for the treatment of all hydrocephalus.

    My question, please: How much additional money was designated to hydrocephalus research by the NIH?

    Thank you for your time!
    Lara

      • tom
      • September 27, 2010
      Reply

      With the exception of the HCRN grant, our current information about direct NIH funding comes from 2006 when it reached $650,000 per year. We are not aware of any increase in hydrocephalus related direct funding from the NIH since that time.

    • Jilinda Richer
    • August 12, 2010
    Reply

    I vote for giving Laurene the honorary (because we can’t afford to PAY her, of course!) title of Spokeperson Extraordinaire!

    What a great job you did, Laureen, in summarizing the Conference, with just enough “spin” to communicate the spirit of that great event.

    On behalf of all of us – THANKS!

    Jilinda Richer

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