#raregiveback

Congratulations to one of our 2020 #schizencephaly #raregiveback grant recipients. we are so excited to give the gift of mobility to another family and look forward to thier #inclusion journey . . . . . #schizencephalyawareness #inclusionamatters #schizencephalygrant #wearerare #freedomjogger #inclusivity #getoutdoors #rarefamily https://www.instagram.com/p/CEoYF8DhSgs/?igshid=1ibyn85r9rhgz

We are excited to announce that #wearerare has chosen a 2020 #Schizencephaly Grant recipient and the family has chosen a freedom jogger stroller for their child. Each year one family is chosen for the two programs available. Our family was chosen on Schizencephaly Awareness day. Although we are rare works with all rare conditions and helps with legal proclamations, research and educationfor rare conditions across the globe we are committed to the continued research and education specifically for Schizencephaly. #raregiveback is a program that is specific to the disorder Schizencephaly. It is the inspiration In which this Foundation was built. Congratulations to our newest family on your way to #inclusion and #mobility We cannot wait to share photos of your journey. #SchizencephalyAwarenessDay #schizencephalyawareness #raredisorder https://www.instagram.com/p/CAcssjVhhdf/?igshid=1fcgjmg2f4fai

We see you rare families #wearerare #raregiveback #rarebrain #schizencephalyawarenes #schizencephalyawarenessday #Schizencephaly https://www.instagram.com/p/CASLGzKBDB9/?igshid=vr97octowgr6

“Everyone is a genius. But if you judge a fish on its ability to climb a tree , it will live its whole life believing that it is stupid.” Albert Einstein. #schizencephalyawarenessday #wearerare #Schizencephaly #schizencephalyawareness #raregiveback #neuroscience #genetics #strokesurvivor #polymicrogyria https://www.instagram.com/p/CAIFNk7hGPD/?igshid=1ne5g21iea0b2

As an organization nothing is possible without the hard work that goes behind the scenes in making things possible for so many families. As we approach February we've already assisted three families with the ability to attend theme parks through our partnerships here in Orlando with the give kids the world program. We are constantly looking at ways to improve our communication across the globe and we are so excited to announce our newest board member and advocate that we have known for almost 12 years Lowis Fisher mom to Luke with bilateral Schizencephaly lives in rainy South Wales She is a fluent welsh speaker, studied psychology, Worked as a support worker in a special needs school before her life changed and was touched by a rare condition. Lowis had Luke at the young age of 16 , he was diagnosed with open lipped #Schizencephaly and #Polymicrogyria (PMG) is a condition that affects the development of the human brain by multiple small gyri (microgyri) creating excessive folding of the brain leading to an abnormally thick cortex. This abnormality can affect either one region of the brain or multiple regions.) Lukes official diagnosis was on May 19th 2005.(Schizencephaly awareness day!) Lowis and Luke are a strong team for advocacy and awareness and have spent the past 15 years fighting for not only the rights of Luke's life but the right of all children and adults fighting this condition and rare conditions in the United kingdom. "We are his voice , his life. It has been a rollercoaster of emotions but Luke and I are so much stronger for it . Luke is now in year 11 and is studying Math, English , History, RE and Geography . He uses an eye gaze communication device to complete work , and can use it to communicate with others . He actually was able to speak to Stephen Hawking with his device before he passed away . He is a fantastic advocate for children with disabilities and wants to leave his mark in the world . He knows first hand how it feels to feel trapped in a body that isn’t working ." We are so excited to have you on our team! #wearerare #raredisease #raregiveback #braininjuryawareness #strokesurvivor https://www.instagram.com/p/B7qbIXfh9xb/?igshid=x5k7h9vmkngo

We want to know what is the hardest lesson you've learned as a special needs parent? RARE asked this two years ago at a convention and surprisingly most of our families talked a lot about realtionships mostly. Many parents felt abandoned by family and friends since they got a diagnosis. Tell us your story. Perhaps through talking about things like this we can bring more issues to light and raise more awareness. #runningwithrareinclusionrun #wearerare #raregiveback https://www.instagram.com/p/B5K4xnMBNZ9/?igshid=1v6fewmjxvm3o

. . . . . #wearerare #runningwithrareinclusionrun #raregiveback #thepurpleandgreeninclusionrun #disabilityrights #inclusionmatters #inclusion https://www.instagram.com/p/B1jLouwhRFY/?igshid=ddqarw8ocgmh

There are so many things we can say about Chelsie, Ashleigh and her family, but we think the most important thing is to say that her memory lives in our hearts forever and every day. Many children that we lose leave footprints in our hearts... some large voids. Thank you to Ashleigh and Chelsie's family who continues to bless other families with #Schizencephaly every year. RARE has two Grant programs available for adults and children with Schizencephaly. Schizencephaly is a very rare neurological condition caused by various markers. It is our hope as an organization to bring light and happiness into the lives of those dealing with this condition. It is through Grant programs that we are able to accomplish that. These grants assist families and getting their loved ones outside and moving as we find this to be so important to be included. It is through Chelsie's memory she can bless other families in 2020. https://wearerare.org/chelsie-wright-fund/ #raregiveback #raredisease #wearerare #runningwithrareinclusionrun #purpleandgreeninclusionrun #Schizencephaly #neurology https://www.instagram.com/p/B1dwGdhBaNQ/?igshid=1k0boaplh46av