RARE is committed to providing updated information about Schizencephaly to families, healthcare facilities and schools.
We have two programs we focus on. One is our iPad fund which allows us to raise funds for families that were denied communication devices. We have sent 56 ipads since 2009 to children challenged with this disorder.
Schizencephaly superhero club highlights a child or young adult with providing their story on social media as well as a personalized Schizencephaly superhero mask that is custom and unique to them.
On occasion we as a board will also approve medical equipment if funding is available.
We do NOT fundraise or send funds for service animals, bills or pay for medications. We also do not participate in political based fundraisers.
RARE will assist by hosting your events and fundraisers by facilitating public awareness, collecting funds that are tax deductible that will go back to the family in full. We will allow use of banners and literature and provide our sources for making your events a success.
It remains the mission of RARE to stay involved in our families fundraising events.
Please contact us if you would like us to host and sponsor your upcoming fundraiser.
We are happy to direct you to organizations that can assist with fundraisers that are out of our realm and ability.