June 2014 marks the second annual Hydranencephaly Awareness Month!
Hydranencephaly is "a congenital condition in which the brain's cerebral hemispheres are absent to varying degrees and the resulting empty cranial cavity is filled with cerebrospinal fluid." It is a rare neurological condition. Prognosis is usually poor, and treatments are symptomatic; however, there are growing numbers of cases that defy prognosis and live several years, with the oldest confirmed case of hydranencephaly reaching the age of thirty-three years.
The Global Hydranencephaly Foundation has taken the lead on events happening for this awareness month. Events include a text-to-donate day and a global run/walk.
The Global Hydrancencephaly Walk/Run will be held on June 28th and 29th, 2014. The purpose of this event is to raise funds to support the Global Hydranencephaly Foundation. Prizes will be given for greatest number of sponsors, most money raised, and best wheelchair decorations. More information on the Walk/Run can be found here.
The Global Hydranencephaly Foundation is a nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly the opportunity to help their child live the quality of life they deserve. Check out their website, Facebook, and Twitter pages.
More information on hydranencephaly can be found on the CNS Foundation definition page.