HA Board Member in the News
HA board member Barrett O’Connor was recently featured in the Falmouth Enterprise regarding her upcoming event to raise funds to further research. Please click below to read the entire article.
Click here to read the article
The SBAC is hosting a tele-program for teens and young adults
The Cinncinnati chapter of the Spina Bifida Association is hosting a series of tele-programs for adolescents and young adults that deal with issues related to transitioning to adulthood. Transition is an issue that effects everybody with a chronic condition. SBAC Tele-program is an evolving learning community and social network with participants from across the country.
To learn more or to participate, please check them out at: www.sbacincy.org
When I Grow Up
By Michelle Emick Ronholm
We all have childhood dreams and aspirations. What kid hasn’t pretended to be ballet dancer, a gymnast, a doctor, a firefighter or a professional baseball player? Sometimes those dreams become reality; often we evolve those dreams into fulfilling and happy lives. What most kids don’t think about as they’re growing up is health care. But as children with hydrocephalus enter their teen and early adult years, they have to be thinking very carefully about their health care.
It Really Is Brain Surgery
By Michelle Emick Ronholm
There were so many fantastic sessions and activities during the 11th National Conference on Hydrocephalus. But one of the most impactful components of the conference was the opportunity to watch live surgeries to treat hydrocephalus.
The conference launched with a tutorial on the brain, how it functions, how hydrocephalus impacts it and how surgery helps to improve brain function. All the charts and graphs that we saw in that presentation came to life when Mark Luciano, MD, Co-director, Aging Brain Center, Section Head of Pediatric Neurosurgery Cleveland Clinic Foundation and member of the HA Medical Advisory Board allowed cameras into the operating room so conference participants, sitting in a lecture hall across the street, could see exactly what happens.
Dr. Luciano performed two surgeries on two different days of the conference — one was a shunt placement surgery and one was an Endoscopic Third Ventriculostomy (ETV). We will be posting official footage from the surgery once we have it in hand. Luckily, our friends in Detroit have posted it on their YouTube channel so we are able to share this rough (but pretty good!) video.
Inspiration All Around
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.
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.
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.
