Advocacy Day and the 12th National Conference

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ha ceo dawn mancusoFamed football coach Vince Lombardi once said that “My teams have never lost a football game. They just occasionally run out of time to win it.

Here at Hydrocephalus Association, we know first-hand just how time is of the essence. Each day, more children and adults are diagnosed with hydrocephalus. And, those previously diagnosed with hydrocephalus face health complications and shunt failures, requiring multiple surgeries over the course of a lifetime. There is no time to waste in our battle to find better treatment options and, of course, prevention or a cure.

On June 28th,  a new “team” of almost 225 hydrocephalus champions joined forces here in Washington, D.C., to walk the halls of Congress and advocate for more public funding of research on hydrocephalus.  Participants in HA’s Advocacy Day met with representatives from over 96 different congressional offices, carrying this important message far and wide. They also conducted multiple media interviews, and honored three very special members of the House of Representatives who have helped us in meeting our goals by promoting our cause with the National Institutes of Health, the Department of Defense, and among other Congressional representatives.

This Advocacy Day was part of a bigger event that HA holds every other year – our 12th National Conference on Hydrocephalus. The agenda was full of educational programs, networking/support events, and opportunities to socialize with others who live with hydrocephalus. It’s the only event of its kind, and was well received by all.

Conference highlights included:

  • A special message from former Congresswoman Gabrielle Giffords (“Fight Fight Fight”) from her husband Captain Mark Kelly, Commander of the final mission of the Space Shuttle Endeavor who gave a rousing talk that challenged participants to dream big and don’t let obstacles stop them from pursuing their goals.
  • Dr. Pat McAllister’s well-received presentation on “Anatomy and Physiology of Hydrocephalus.
  • Judith Schneider, expert on Congress and its processes, presenting on “Getting to the Heart of Congress” to a standing ovation.
  • A wide variety of interpersonal support sessions for fathers of children with hydrocephalus, mothers of children with hydrocephalus, adults with NPH, young adults with hydrocephalus, siblings of hydrocephalus patients, spouses/partners with those living with hydrocephalus, and grandparents of children with hydrocephalus.
  • The Robert Pudenz Lectureship presented by Dr. Story Landis, Director of the National Institute of Neurological Disorders and Strokes (NINDS) at the National Institutes of Health (NIH).
  • A report on “Public Funding Trends in Hydrocephalus Research”  by Hydrocephalus Program Director at NINDS Dr. Jill Morris and HA Chairman Paul Gross.
  • Intergenerational Panel of hydrocephalus patients and family members facilitated by Dr. Mike Williams, where our panelists shared their biggest challenges, lessons learned and hopes for the future.
  • A panel presentation about the history across the ages of the diagnosis and treatment of hydrocephalus in both children and adults, as well as an inspiring memoir of the establishment of the Hydrocephalus Association and its accomplishments by HA founder Emily Fudge.
  • Presentation of two Distinguished Service Awards to Dr. Howard Conn (posthumously) and Dory Kranz.
  • A ground-breaking presentation on the Treatment of Hydrocephalus in Sub-Saharan Africa by Dr. Benjamin Warf.
  • Approximately 40 different break-out sessions on numerous topics covering the latest research findings, newest treatment options, and resources for addressing typical work-life challenges for hydrocephalus patients and families.

As you can see, there was something for everyone. If you were one of those who attended, we thank you for making the effort to spend time with us and to help us carry our important message to Capitol Hill. If you missed the activities this year, we hope you will be able to join us in 2014…stay tuned for more details about the location and dates to come!

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