Never underestimate a New Yorker on a mission…or get in her way! As we continue our interview series commemorating our 30th anniversary, this week Randi Corey, our National Director of Special Events & Volunteer Support, sits down with our Long Island WALK Co-Chair, Mia Padron. Mia’s son, Tyler, was born with hydrocephalus, but not diagnosed until he was 23 months old. Those 23 months were emotionally taxing, as Mia instinctively knew something was not right, despite Tyler’s pediatrician advising her otherwise. Once Tyler was diagnosed and treated, Mia decided it was time to raise awareness of hydrocephalus and the necessary funds to find a cure. Read more
Matthew Schwerha interviews our former Chicago WALK Chair, Sherry Reising, of Oak Forest, on her journey with hydrocephalus, after being diagnosed at 22. The Chicago WALK took place on August 18, 2013 at Soldier’s Field. The Doings Weekly is part of the Chicago Sun-Times.com network.
Short Nose Only Rescue Team (SNORT), is a New Jersey-based all-volunteer rescue for brachycephalic dogs, including breeds like French and English bulldogs, Boston terriers and pugs. SNORT has taken Anise, a hydrocephalic puppy, into its care. Nina is an HA member and also a SNORT volunteer. She wanted to share Anise’s story with our community.
I have been a dog lover for a very long time. My family owns a French bulldog named Truffles, and we have fostered seven rescue dogs, including a hermaphroditic pug that was surrendered to SNORT last January. (We called him Omar, but his adoptive family renamed her Pippa!) I have Read more
By Randi Corey, National Director of Special Events & Volunteer Support
10 years ago, 60 people in Denver, Colorado, came together for Denver’s first WALK. As we continue our interview series in commemoration of our 30th anniversary, we sit down with Phyllis Rogers, who is in her 10th year chairing the Denver WALK – HA’s longest consecutive serving WALK Chair! Denver was our third WALK site after the original WALK site, San Francisco, followed by Richmond, Virginia. Phyllis reflects on her drive to continue to chair the WALK and her hopes for the future of the Hydrocephalus Association (HA). Read more
As we continue our interview series in commemoration of our 30th anniversary, we sit down with Dr. John Kestle, Head of the Department of Surgery at The University of British Columbia in Vancouver, Canada. Dr. Kestle is also a member of our Board of Directors, our Medical Advisory Board (MAB), and a founding member of the Hydrocephalus Clinical Research Network (HCRN). Dr. Kestle shares his thoughts on the current state of hydrocephalus research, founding the HCRN, and his reflections on the Hydrocephalus Association. Read more
As we continue our interview series commemorating our 30th anniversary, this week Randi Corey, our National Director of Special Events & Volunteer Support, sits down with our Houston WALK Co-Chair, Margaret Powers. Margaret chaired last year’s inaugural Houston WALK – without the assistance of a Co-Chair! The event was tremendously successful. Despite a deluge, this first-year event raised over $23,000 from more than 300 participants. In our interview, Margaret shares her thoughts about the Hydrocephalus Association and starting and coordinating a WALK. Read more
This announcement is reprinted with permission from the Hydrocephalus Clinical Research Network (HCRN) blog.
By John R.W. Kestle, MD, MSc, FRCSC, FACS
With recent moves of HCRN investigators Dr. John Wellons to Vanderbilt University and Dr. John Kestle to University of British Columbia, HCRN has decided to expand its network from seven to nine centers to incorporate their respective hospitals in HCRN research. Each center will begin its trial period immediately which involves adding patients to the HCRN registry as well as participating in the HCRN Quality Improvement Study for post surgical infections. Dr. Kestle will continue in his role as Chairman of HCRN and Dr. Wellons will continue to be the lead PI on the Study of Post Hemorrhagic Hydrocephalus which is nearing the completion of its accrual of patients.
Each year the American Association for Neurological Surgeons (AANS) hosts its annual scientific meeting bringing together neurosurgeons from across the country. This year’s meeting entitled, ”Changing Our Culture to Advance Patient Safety,” focuses on the patient-safety movement. HA staff members Aisha Heath, Director of Development, Karima Roumila, Director of Support and Education, and Ashly Westrick, Research Manager, join esteemed members of the medical community for this exciting event.
“The feel is very welcoming and positive,” reports Westrick, who has had the opportunity to participate in sessions on current research initiatives.
The AANS meeting is an opportunity for our staff to spend time with members of our Board of Directors and Medical Advisory Board who are in attendance as well as connect with the larger medical professional community. It is an opportunity for us to raise awareness about hydrocephalus and our association as well as connect with new companies in the neurosurgery field and build new relationships.
As we continue our interview series commemorating our 30th anniversary, this week we sit down with a member of our board who has also been involved with HA since the early 1990’s. Ralph Kistler has served on the HA Board of Directors since 2002. Prior to joining the board , he was Vice President of Sales at Medtronic Neurosurgery. He has 45 years in the medical device business and, within that 45 year time period, 25 plus years working within the medical neurosurgery field. Read more
Youth historically bring a wave of energy and creativity in movements and in organizations. Our young adult and teen community is no different. Our Teens Take Charge (TTC) program provides support, training, awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. It trains teenagers and young adults (and their siblings) who are affected by hydrocephalus to become self-advocates with both health professionals and with their legislators. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Haylea Lynn Blank, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association. Read more