EDUCATION & SUPPORT

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Record Attendance at HA CONNECT

A record-breaking 700 people attended HA CONNECT, our 15th National Conference on Hydrocephalus, in Orange County, CA. People traveled from as far as New Zealand to take part in this rich learning experience, where they connected with others impacted by hydrocephalus and gained helpful tools and resources to navigate the challenges of living with the condition.

HA CONNECT featured more than 70 sessions with world-renowned medical professionals and researchers. In addition to providing opportunities to network and make valuable connections, this extensive three-day program covered topics of interest to all members of the hydrocephalus community, including, but not limited to, relationships, transition from pediatric to adult healthcare, learning challenges, treatment, emotional wellness, nutrition and lifestyle techniques. Scientists also discussed current research efforts focused on preventing the development of hydrocephalus and identifying alternative treatment options.

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Tessa Van der Willigen
Parent of David

Our family has attended almost every HA Conference over the last two decades. We started coming when our son, David, who has hydrocephalus, was two years old! At every Conference, we’ve found there is useful information to learn, both because there is new science and because our family is at a different stage in life. And every time we feel the support of the community and how great it is to know we are not alone on this journey.”

CHANGE MAKER

Medtronic

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Medtronic has been a longstanding partner of the Hydrocephalus Association since the beginning, donating over $1 million to help advance our mission. In 2018, Medtronic sponsored our National Conference on Hydrocephalus, helping us provide quality educational programming to attendees from across the United States.

Tom Poss

Director of Marketing, Medtronic

“Medtronic is committed to our long-standing support of the Hydrocephalus Association (HA) team and all the wonderful work that they do for patients and families living with Hydrocephalus.  Medtronic understands the importance and the need to support all of the work that HA is doing to raise funding for much-needed research in this field of medicine. We are hopeful that all of these efforts will help to minimize the number of brain surgeries hydrocephalus patients undergo in their lifetimes.”

Transition Paper Published in Journal of Neurosurgery

A paper summarizing the findings from our first-ever Transition Summit was published in the prestigious Journal of Neurosurgery (JNS).  This marks the first time a major paper was published in an academic journal comprehensively highlighting the challenges faced by teens and young adults with hydrocephalus when transitioning from pediatric to adult care. Being published in JNS, the world’s leading journal in neurosurgery, was a big win for the hydrocephalus community because it will help educate medical providers about this important issue. The JNS reaches both pediatric and adult providers, all of whom will have crucial roles to play in improving transition.

Every year, an estimated 5,000 to 6,000 teens and young adults living with hydrocephalus leave their pediatric neurosurgeon and/or neurologist only to discover that few adult physicians will take them on as patients.

Amanda Garzon
National Director of Program Services and Communications, Hydrocephalus Association

"As parents, we know how stressful it can be to find an adult neurosurgeon willing to take on our son or daughter's healthcare needs. That's why this paper is so important. It's basically saying to doctors that there is a crisis in care and we need your help to fix it."