We are RARE inc is honored to assist the Schizencephaly community with their effort to raise more awareness.
The day of Awareness and Schizencpehaly ribbon© was created in 2012 and has been celebrated annually.
For this Disorder, we have created a ribbon in their selected colors ( Purple and Green) Green for Cerebral Palsy, and Lavender/Purple for epilepsy.
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 the initiative to seek local and state support we offer forms for you to present your state.
Officially May 19th is our nationally 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.
On May 19th, 2015 Senator Hoeven from North Dakota introduced a resolution to the 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 on 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.
Please download a form for your state representatives/Mayors/ governors to recognize this day
In a jump-start to help this movement, we have created a ribbon in selected colors ( Steel blue grey & Lavender)grey for grey matter and blue for rare disease, and (Lavender/purple) for epilepsy.
We are RARE created the first day of awareness Sept 8, 2018, as the inauguration date and that will continue annually).
Created in Sept 2017 day of awareness and ribbon©
RARE stands committed to helping rare neurological conditions raise awareness and campaign for research for conditions that are unknown.
We were contacted by Emiko Miyasaki who lives with this condition. It is her hope to bring much-needed awareness and funding to this rare condition. We want to continue supporting her efforts in this battle.
To assist in the efforts of those with this condition; We are RARE created a legal term proclamation that we ask all of you to contact representatives, mayors, senators, both local representatives/ statewide in an effort to assist in the raising of awareness of Sunflower Syndrome Awareness day and by supporting the proclamation designating August 4, Sunflower Syndrome Awareness day.
*August: The month of the Sunflower. * Aug 4 the anniversary date of the Symposium Sunflower Syndrome at Mass General 2018.
Your representatives will be a part of creating positive change and awareness to a condition they may otherwise never have learned of.
We ask you to call your elected official’s offices and invite them to be a part of a special interest story about your efforts and ask them to not only sign the proclamation but to meet your loved one.
Take photos and document the first year of awareness as this leads to digital footprints that are the first step in creating awareness and days of recognition. Invite news and media to run articles or document the story. SHARE!
We have also assisted in creating an awareness ribbon for families to share. Purple for seizures/epilepsy and sunflowers to bring awareness to the condition. We hope this will help the RARE families that are seeking answers to this unique condition.
Sunflower syndrome is a rare, epileptic disorder characterized by highly stereotyped seizures. During these seizures, individuals with Sunflower syndrome turn toward a bright light while simultaneously waving one hand in front of their eyes. This unique behavior is coupled with abrupt lapses in consciousness according to Massachusetts general hospital neurology.
Symptoms of Sunflower syndrome include an initial attraction to bright light, followed by seizure activity that includes episodes of hand waving and disruptions of consciousness. As stated above, these episodes typically start before the age of ten. A form of epilepsy that involves self-induction by facing the Sun and waving an open hand in front of one’s eyes. There is little to NO conclusive research but efforts are being made to raise funds.
Please see the following video.
Patients with Sunflower syndrome can also experience other types of seizures. These include absence seizures and generalized tonic-clonic seizures. For some, tonic-clonic seizures occur after prolonged exposure to bright light and prolonged hand waving episodes.
For information on this condition please contact this link for fundraising efforts pertaining to research
Under the direction of Elizabeth Thiele, MD, PhD, the Pediatric Epilepsy Program at MGH has initiated several projects to develop a better understanding of Sunflower syndrome.
Support groups are located on Facebook
Pages related to Sunflower Syndrome on Facebook
How can you help?? Support the ongoing efforts of fundraising, raising awareness and support for Sunflower Syndrome located here
The Pediatric Epilepsy Program at the Massachusetts General Hospital is currently working to identify funding sources for current and future projects designed to understand and improve clinical care for children with Sunflower syndrome and are in the process of establishing a dedicated multidisciplinary Sunflower syndrome clinical program contact firstname.lastname@example.org