This is my beautiful granddaughter. She is one of the many faces of Schizencephaly. To find out more about this birth defect, caused by a fetal stroke in utero, you can go to WeAreRare.org. (You can also make a donation to help raise awareness) Although there is no cure for
Mission: We Are R.A.R.E., INC. is a 501(c)(3) company that is comprised of a group of parents who volunteer their time to reach out globally to advocate for rare brain disorders like Schizencephaly, and Microcephaly. We collectively set up events and community & professional education programs throughout the year to help with our efforts.
The event registration fees and donations we collect go to help with our organization’s operational cost, advertisement, education seminars for medical and education professionals, advocating for more awareness about rare brain disorders (including but not limiting to Schizencephaly, Microcephaly, and encouraging research by medical professionals through scholarships/grants.
All proceeds go back to families and educational training. We are an unpaid board as registered with the federal government
Results: over 57 iPads raised for children.
2014 Senate approved May 19th as national Schizencephaly awareness day thanks to Senator John Hoeven
18 foot banner sailing on the famous Liana's Ransom
Publications. Schizencephaly: angels with broken wings
Nancy grace award 2008
2016 medical conference/2017 rare convention
Listed on many national health organization websites
Target demographics: Families touched by rare neurological disorders like Schizencephaly
Direct beneficiaries per year: 78
Geographic areas served: Florida
Programs: Fundraisers, Medical training and education, assistance for communication devices and support
This year we will be seeking community and US grants to assist in finding researchers
This is my beautiful granddaughter. She is one of the many faces of Schizencephaly. To find out more about this birth defect, caused by a fetal stroke in utero, you can go to WeAreRare.org. (You can also make a donation to help raise awareness) Although there is no cure for this, raising awareness is vital to understanding what this precious little girl is and will go through during her life. She is part of my heart and soul and I love my tinker bell to the moon