Schizencephaly Day and May

We are RARE inc is honored to assist the Schizencephaly community with their effort to raise more awareness.

For this Disorder we have created a ribbon in their selected colors ( Purple and Green) Green for cerebral Palsy and Lavender/Purple  for epilepsy.
Please download a form for you state representatives/Mayors/ governors to recognize this day
dayofawareness-Schiz2020

The first official year was 2013 when thousands of friends and family took to social media to share the date and colors they had chosen to represent Schizencephaly.

We celebrate Schizencephaly awareness throughout the month of May which is stroke awareness month as well and  with many families taking initiative to seek local and state support we offer forms for you to present your state .

Officially May 19th is our national recognized day of awareness and we thank the many lawmakers and organizations that have recognized us and support that day as a day of celebration for the many lives affected by this particular disorder .

Please join us every May and help us celebrate the lives of so many courageous and beautiful souls fighting large battles .

 

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Senator John Hoeven

Senator John Hoeven

On May 19th 2015 Senator Hoeven from North Dakota introduced a resolution to senate making May 19th Schizencephaly Awareness day. Along with the Wolff family we would like to thank you all for your efforts and for pushing this through. What an amazing day to celebrate life and our children and families. Please click Senator Hoeven’s picture to the official press release.

 

 


Since 2012 unofficially / 2013 officially, families have taken part in Schizencephaly Awareness day celebrated on May 19th. We are excited to say we now have it documented with over 30 states and 79 cities! The celebration of this day brings necessary awareness and hope to many families that have been flooded with local and statewide support. We now have several websites and official awareness ribbons recognizing our efforts for MAY 19th, our official Schizencephaly Awareness day!
Purple for Epilepsy and Green for cerebral Palsy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


          2016

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Connor

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We Are RARE

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1 Comment

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