We are RARE is excited to announce a new project created by a 12 year old girl doing amazing things.
Her mom has unilateral Schizencephaly and Jasmyn decided to take action and become a voice for this disorder.
She is an inspiration to many by reaching out into the community and spreading awareness.
If you would have a friend, family member or loved one you’d like to help please go to our contact us page and email us. Don’t forget to mention the Jasmyn project and we will assist you with ideas on how you can get awareness out there.
We invite youths and students to get involved so we can give special gifts back for your hard efforts.
Thank you Jasmyn for being an inspiration to youths touched by Schizencephaly. We are so proud of you!
My name is Jasmyn and I am 12 years old. I am member of National Junior Honor Society (NJHS) at my school. NJHS is the nation’s premier organizations established to recognize outstanding middle level students. In NJHS we had to find ways to complete community service hours so I chose We Are RARE.
We Are RARE is an amazing organization because it helps educate, raise awareness and funds for people with a rare developmental disorder called Schizencephaly. Schizencephaly is characterized by abnormal slits or clefts in the brain. I want to raise awareness for Schizencephaly because my mom has it which causes her to have cerebral palsy and epilepsy. I have realized that many people have never heard of Schizencephaly. Just because Schizencephaly is rare does not mean that people should be unaware of what Schizencephaly is.
Knowledge is powerful. The more knowledge and awareness that we spread the more people can be aware of their health and doctors will be able to help their patients better. How would you feel if you or your loved one had a rare disorder and you or doctors could not help them?
Thank you Tricia, Ron, Mike and AIRES for making it possible so that I can achieve my goals of raising awareness and funds for We Are RARE. So far $400 was raised for the iPad fund. I wear my Schizencephaly shirt to all of the NJHS meetings. When I wear my shirt people ask me what Schizencephaly is. I am able to spread awareness by answering their questions. I will also be completing a 5k walk next weekend with AIRES during the Autism Speaks walk to earn money for We Are RARE. So far I have $100 worth of pledges. After the walk, AIRES will help me put together a fundraiser.
It is important to support Schizencephaly Awareness so that it will be just as familiar as other conditions such as Autism and Breast Cancer. Schizencephaly is becoming more known. This year, May 19th became National Schizencepjaly Awareness Day. I am hoping that one day we can prevent and cure Schizencephaly!
Please help support We Are RARE and raise Schizencephaly Awareness! I challenge all of you to wear Schizencephaly colors (purple and green) and tell at least one person what Schizencephaly is and ask them to complete the same challenge! Thanks to all those who raise Schizencephaly Awareness