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.
You can locate her Instagram here
To assist in 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, 2019 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 officials 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 of 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!
Proclamation located here Sunflower syndrome
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 a open hand in front of ones 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