HA Announces RFA for New Round of Research
The Hydrocephalus Association (HA) is pleased to announce the release of the Request for Application (RFA) for its upcoming round of hydrocephalus research awards. Read more
A Day of Hydrocephalus Support, Education and Fun at the Oakland’s Children’s Hospital
Last month we were excited to take part in the local Oakland Children’s Hospital hydrocephalus festival in California. Each year, Sue Ditmyer, RN, CNP and her medical team organize a daylong event for patients and their families affected by hydrocephalus.
Our Hydrocephalus Resource Library is growing like a tree in well tilled soil!
By Pip Marks, HA Director of Support & Education
Every week new published articles related to hydrocephalus are being added to our Hydrocephalus Resource Library. For example, check out this very interesting, new paper authored by Dr. Leland Albright “Hydrocephalus shunt practice of experienced pediatric neurosurgeons”. Read more
Traveling with Hydrocephalus
We asked on our Facebook Fan page:
“If you are planning to travel this summer have you inquired about neurosurgeons in the area you are visiting, in case of an emergency?”
Here is what you said:
After looking at the results, we had asked Debby Buffa, Hydrocephalus Association Board Member, mother of two young adults with hydrocephalus and a support group leader to share her experiences, wealth of knowledge and tips to take into consideration in preparing for a trip. We include a list of resources at the end of this article.
Traveling with hydrocephalus!
By Debby Buffa, Hydrocephalus Association Board Member Read more
Educating the Media about Hydrocephalus
Rick Smith, Acting Chief Executive Officer
We recently heard from someone with a complaint about her local newspaper – the paper had printed inaccurate information about hydrocephalus as part of the Congresswoman Giffords story. We responded to her with the suggestion that she should write a letter to the editor with the correct information to educate people about hydrocephalus. In the coming days and weeks we should monitor these stories and take every opportunity to provide good and accurate information about hydrocephalus. Really, it’s a great opportunity to increase awareness about hydrocephalus.
Click here for more resources
Congresswoman Gabrielle Giffords received a permanent shunt for her hydrocephalus Wednesday, May 18th
Arizona congresswoman Gabrielle Giffords, who was shot in the head more than four months ago in Tucson, Ariz., had a permanent ventriculoperitoneal (VP) shunt inserted for hydrocephalus.
Rep. Gabrielle Giffords is recovering well after her two brain surgeries yesterday. Neurosurgeons also placed a bone flap to protect her brain and skull. This operation, known as cranioplasty, is another milestone in Rep. Giffords’ recovery and will allow her to move around without the helmet she has worn since January. Doctors have marveled not only at Rep. Giffords’ survival, but also at her recovery.
We wish congresswoman Giffords speedy recovery.
http://today.msnbc.msn.com/id/43084987/ns/technology_and_science-space/
Workplace Communication Tips for People Living with Disabilities
by Dave Carl, job coach and guest blogger
My primary focus as a social worker is working with individuals living with disabilities teaching a variety of independent living skills including employment. Through my career I have seen the progress of people living with disabilities in the workforce who at first had very low self-confidence and communication skills. Many knew what they wanted but did not know how to ask for it or did not have the courage to ask for it. Read more
Dr. Salomon Hakim – a Giant in the Field of Hydrocephalus
by Marvin Sussman, Ph.D., HA Board Member and Pip Marks, Director of Support and Education
Respected Colombian neurosurgeon Salomon Hakim, MD, PhD, who worked extensively in the field of hydrocephalus, has died at the age of 88. Dr. Hakim passed away in a Bogota hospital in the early hours of Thursday morning, May 5, due to a cerebral hemorrhage. Dr. Hakim, whose family name means “doctor” or “wise man” in Arabic, earned his medical degree from the Universidad Nacional in Bogotá and continued his medical education in neurosurgery at Harvard, also earning a Ph. D. in neuropathology. During his neuropathology fellowship research, Dr. Hakim performed necropsies on patients who died from CNS neurodegenerative conditions such as Alzheimer’s disease. He noted, in many of the cases, the brain ventricles were enlarged without destruction of the brain cortex. At that time, nobody was able to explain the reason for this observation. This led Dr. Hakim to hypothesize that these patients suffered from what he described as “Normal-Pressure Hydrocephalus” or NPH after finding a 16-year-old living patient with this condition. Read more
Hydrocephalus on ABC’s Grey’s Anatomy — CALL TO ACTION
Last night, (5/5/2011), ABC’s Grey’s Anatomy featured hydrocephalus for the second time in the show’s history. The first time was in November of 2009 and involved Normal Pressure Hydrocephalus, which affects older adults. In last night’s episode ‘White Wedding’, Derek Shepherd (Patrick Dempsey) and Meredith Grey (Ellen Pompeo), adopted a baby from Africa with hydrocephalus. Read more
Alabama Girl Overcoming Predictions
The Andalusia StarNews featured an article on six year old Diana Boyd. Born with hydrocephalus, her parents were given grim predictions about her future, which she is already surpassing, having just participated in the Bright Beginnings annual graduation ceremony.
Please click here to read the full article.
