The Board of Directors is meeting in Seattle, WA, to complete the five year strategic plan and set priorities for 2015. In addition to an aggressive two-day agenda, the board was invited to tour the research labs at the Seattle Children’s Research Institute, who graciously hosted the meeting.
Farewell to Two Board Members
Two dedicated and long-standing board members completed their terms and were honored for their dedication by board chair, Barrett O’Connor. Ralph Kistler served on the board for over 12 years as the Industry Representative, acting as a liaison with the neurosurgical community and the shunt industry. He provided significant assistance in building relationships with Medtronic, a leading shunt manufacturer, and the Rudi Schulte Research Institute. He was recognized with a Lifetime Achievement Award in 2006 for his contributions to building bridges with industry, the neurosurgical community and the association. Many younger members of our community share fond memories of Ralph helping them build shunts at our shunt building workshop at our biennial conference. The association is grateful for Ralph’s unwavering commitment to the the mission of the association.
Debby Buffa served on the board for over 10 years. Debby has two adult children with hydrocephalus and many members of our community see Debby once a month through her video blog, Through a Mother’s Eyes. The blog is indicative of the commitment Debby has shown to providing support and education to our community. When her daughters were young, her service and contacts in managing a neurosurgeon’s office afforded her the ability to work with local staff to create a support group in St. Louis in 1987, which was later incorporated into the association. Since then she has played an active role helping organize our biennial conference, contributed to many of the association’s resource guides for patients and their families, and she has represented the association at physician and patient meetings at the national level. She was recognized for her contributions to the mission of the association with the Distinguished Achievement Award in 2014. Debby will continue to serve our community on the education committee and the scholarship review committee. We’re grateful for her continued service.
Welcome New Board Members
The board also welcomed five new members to join the 13 other sitting directors. Below are bios of each of our new members. We are grateful and excited to have this new diverse group of individuals join the board and bring their unique talents, expertise and perspectives to the work of the association in order to further our mission to promote a cure for hydrocephalus and improve the lives of those affected.
Susan Fiorella is the Managing Director of Strategy and Communications in the Mid-Atlantic Permanente Medical Group of Kaiser Permanente. Her current responsibilities include region-wide clinical services delivery planning, internal and external communications, and overseeing a team of project managers to ensure effective operational strategy implementation.
Susan and her husband Ben have three children. Their 2 ½ -year old son, Jake, has hydrocephalus. Since his diagnosis, Susan has been very active in the Hydrocephalus Association. She is currently an active volunteer on the advocacy and development committees. She also brings a special set of skills to the board through her professional experience in health care management. Many of you know Susan through the Forbes article, A Mother’s Plea To Save Her Child From A Neglected Disease.
Mark Hamilton, MDCM, FRCSC
Dr. Mark Hamilton is the Director of the Adult Hydrocephalus Program at the University of Calgary and the Chairman of the Adult Hydrocephalus Clinical Research Network (AHCRN). He received his undergraduate degree from the University of Toronto in 1979 and his medical degree from McGill University in 1983.
Dr. Hamilton is very committed to hydrocephalus and the work of the Hydrocephalus Association. As a founding member of the AHCRN and the current chair, he has volunteered his time for the past two years to advance the development of the network. He is passionate about adult hydrocephalus and brings extensive expertise in adult hydrocephalus and normal pressure hydrocephalus (NPH) as well as his clinical and scientific experience as a neurosurgeon and a researcher. He started his career as a pediatric neurosurgeon, which has fueled a strong commitment to serving the transitioning population of teenagers moving to adult medical care.
Jennifer Pope is the Senior Director for Community Relations and the Kings Care Foundation for the National Hockey League’s Los Angeles Kings. Her responsibilities include execution of all fundraising events, programming and partnerships in the local community, and management of the LA Kings giving programs.
Jennifer and her husband Matt have a son Charlie who has had 3 surgeries for his hydrocephalus. Jennifer has been very active with the association, sharing her wisdom and ideas with the development committee, the conference sponsorship task force, and the communications committee. She is a co-chair of the Los Angeles WALK, which is still noted as one of the association’s most successful inaugural WALKs, raising over $130,000. Jen and her family have done numerous television interviews to help raise awareness.
Eileen Rodger has spent the last 26 years as a Registered Nurse working in a variety of roles and medical settings such as Cardiac, Inpatient Neuro Rehabilitation (stroke, traumatic brain injury and spinal cord injury), Home Health, and currently in the Post Anesthesia Care Unit (Recovery room).
Eileen’s involvement with HA started almost 13 years ago when her six month old son, Alex, was diagnosed with hydrocephalus and Eileen and her husband Mike were given an HA educational booklet from Dr. John Ragheb at Miami Children’s Hospital. Since then she has become the WALK Chair for South Florida, and this November she will be celebrating her 9th Annual WALK, last year raising over $65,000. Eileen is also a mentor for new WALK chairs and is involved with the HA Community Network group.
Dr. Williams is Medical Director of The Sandra and Malcolm Berman Brain & Spine Institute at Sinai Hospital of Baltimore. He received his MD and Neurology training at Indiana University Medical Center, finishing in 1989. After a fellowship in Neurosciences Critical Care at Johns Hopkins Hospital, he joined the Department of Neurology faculty in 1991, where he was an NCCU attending physician and also established the Adult Hydrocephalus Center. He moved to Sinai Hospital in 2007 to become Medical Director of the Brain & Spine Institute, where he also established and directs their Adult Hydrocephalus Program.
Dr. Williams co-chaired the first-ever NIH National Institute of Neurological Disorders and Stroke (NINDS) Workshop on hydrocephalus in 2005 and was on the steering committee for the 2009 NINDS and Hydrocephalus Association–supported conference, “Improving outcomes in hydrocephalus: Bridging the gap between basic science and clinical management.” In 2008, he helped to create the International Society for Hydrocephalus and CSF Disorders (ISHCSF), hosted their first scientific conference in September 2009, and just completed his term as the president of the ISHCSF. He also is a member of the Scientific Advisory Panel to the Intracranial Hypertension Research Foundation. In 2013, he was invited by the Institute of Medicine to comment on NASA’s Evidence Report on the Risk of Spaceflight-Induced Intracranial Hypertension/Vision Alterations.
He is actively involved in patient advocacy with the Hydrocephalus Association, is a member of the Medical Advisory Board, and one of the founding members of the AHCRN. He and his staff host a support group in Baltimore open to all ages, though primarily addressing issues of adult hydrocephalus and normal pressure hydrocephalus. Most of our community knows Dr. Williams as a welcoming Medical Co-Chair of our 2012 and 2014 biennial national conference.