Bringing Hope and Olympic Gold to Those Living with a Rare Brain Condition
Bethesda, MD (PRWEB) May 20, 2014 -- Adam Page knows the meaning of determination. At the age of 15, he was the youngest member of the 2007-08 U.S. National Sled Hockey team. Now 22 years old, Adam is a two time gold medal winner for the Sochi 2014 and Vancouver 2010 Paralympic Winter Games, respectively. Born with spina bifida and hydrocephalus, Adam will inspire both kids and adults alike as he addresses the participants of the 13th National Conference on Hydrocephalus, hosted by the Hydrocephalus Association (HA), July 9-11, 2013, in Portland, Oregon.
“Adam has taken on the challenge to be the best that he can be,” shared his father, Norm Page. “It is an honor for him to talk about perseverance and determination to individuals sharing his journey with hydrocephalus. He hopes he can inspire the kids coming behind him to live their dreams.”
Spina bifida is a condition where the spinal cord grows outside of the body. Approximately 90% of individuals with spina bifida also live with hydrocephalus, a condition in which cerebrospinal fluid accumulates in the brain. The only treatment for hydrocephalus requires brain surgery. The prevalent treatment is the implantation of a shunt, a medical device developed over 50 years ago that has a high failure rate, relegating patients to a lifetime of brain surgery. There is no cure. Adam has undergone 10 surgeries to treat his hydrocephalus and spina bifida. He also has paralysis in his lower extremities. Adam’s physical and medical challenges have not stopped him from building an impressive list of athletic accomplishments, including being a seven-time U.S. National Sled Hockey Team member (2007-14), and a four-time International Paralympic Committee Ice Sledge Hockey World Championship medalist; gold (2009, 2012), silver (2013), and bronze (2008). He has dedicated much of his free time to working with individuals with disabilities, including volunteering for USA Hockey to build sled hockey programs around the country and speaking publically to inspire and motivate individuals to work with and overcome their challenges.
“When my daughter was first born and we were told she had a brain hemorrhage which resulted in hydrocephalus, I didn’t know what her future would hold. Could she play sports? Could she drive a car? Could she go to college? I’m very excited to have my now 13 year old daughter hear Adam speak and then meet and talk to him. He is living proof that all her hard work will help her reach her dreams, especially on those days she is having a hard time coping with her hydrocephalus,” stated Amanda Garzon, mother of Gabriela, who has two shunts implanted to treat her hydrocephalus.
There are over 1 million Americans living with hydrocephalus in the U.S., yet it remains a little known condition. Anyone can get hydrocephalus. One to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than brain tumors. Additionally, people of any age can acquire hydrocephalus at any stage of life due to brain hemorrhage, infection, tumors, trauma, or, for unknown reasons, through the aging process. Normal Pressure Hydrocephalus (NPH), which primarily affects the senior population, is often undiagnosed or misdiagnosed as Alzheimer’s or Parkinson’s disease. A new study estimates that there are 700,000 seniors living with normal pressure hydrocephalus.
The biennial conference provides tools and personal connections to address the medical, educational and social challenges of living with hydrocephalus, and is an opportunity for individuals to connect with peers who understand what it means to live with the challenges that can accompany the condition. In addition to networking and supporting each other, participants spend three days mixing with leading medical professionals, including neurologists, neurosurgeons, neuropsychologists, nurses, educational consultants, and an array of other specialists. The 2014 conference will be held at the DoubleTree by Hilton Portland, 1000 NE Multnomah Street, Portland, OR 97232. The conference will begin mid-afternoon on Wednesday, July 9, and conclude by 10:00 pm on Friday, July 11, 2014. To learn more about the conference and to register, please visit http://www.hydrocephalusconference.org or contact the Hydrocephalus Association at (888) 598-3789.
About the Hydrocephalus Association
The Hydrocephalus Association (HA) is a charitable organization dedicated to eliminating the challenges of hydrocephalus by stimulating research and supporting people who are affected by this condition. Incorporated as a non-profit in 1986, HA is now the nation’s largest and most widely respected organization dedicated solely to serving those affected by hydrocephalus. HA has been instrumental in creating a community of individuals, families and health care professionals addressing the complexities of hydrocephalus in all age groups.
Amanda Garzon, Hydrocephalus Association, http://www.hydroassoc.org, (301) 202-3811 Ext: 26, [email protected]
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