We Are RARE Executive Board
Tricia Dennis is mom to Super Noah and founded We Are RARE ( Formally Noahscart) in 2008. She also serves on the board of directors for the Orange County Advisory and community advisory boards.
Co-Author of Schizencephaly: Angels with Broken Wings and author of A Place in the Sun; Tricia’s specialty is Research/Public speaking and whole food blended diets. She spends much of her time working in the community and alongside hospitals and medical facilities educating about Schizencephaly. She has also been featured on Nancy Grace as an Extraordinary Parent in 2008.
Ron Casella serves as Vice President and has background as the Orlando NRA chairperson. Ron is a strong advocate for this disorder and spends much of his time in the community organizing events and reaching out to spread awareness about Schizencephaly. He is one of the boards fundraiser committee members and community event coordinators.
Stephanie is mom to Ada-Lily ( Bilateral Schizencephaly. She is Co-Author of Schizencephaly: Angels with Broken Wings and a strong advocate and researcher for this disorder. Stephanie is very involved in support and reaching out to families facing this disorder as well as providing links to causes and symptoms of Schizencephaly. Stephanie is our executive director.
Estelle is a teacher in North Carolina and mom to Nadia ( Bilateral Schizencpehaly) She is s strong advocate for education and resources for families seeking educational rights and activism.
Kari Wolff is mom to Libby with bilateral Schizencpehaly. She helped organize through the state of North Dakota a bill proposed by Senator Hoeven making May 19th an official day of awareness. Kari is also on the Schizencephaly Conference and event committee
Heather Leigh is an adult with Unilateral Schizencephaly who has acquired a vast amount of knowledge about the conditions associated with Schizencephaly. At the age of three, she was originally diagnosed with cerebral palsy. At the age of eleven, she was diagnosed with epilepsy. It was not until 2012 that a new team of neurologist’s with Baylor College of Medicine in Houston, informed Heather Leigh that she actually had Unilateral Schizencephaly. Since that revelation, she continually strives to acquire as much information as possible about the condition, in order to educate herself and become a dependable resource for others seeking information on this rare condition. As an advocate for Schizencephaly Awareness, Heather Leigh’s ultimate goal is to become a strong voice for those with this condition, who are not able to communicate on their own behalf. Heather Leigh is an accomplished photographer who works in film and media production, living in Houston, Texas. We are honored to have her as a team member.
Parent to Bryan age 2 with Bilateral open lip Schizencephaly. On September 25, 2013 Mike found out Bryan had Schizencephaly and he has been researching and advocating for him since. This included a successful 5k fundraiser that bloomed into a second fundraise with the sale of 5k merchandise. Mike is located in are our North Carolina Outreach and community events area.
Krisine King Louisiana, Mom to Jackson understands severe cases of Schizencephaly involving Hydranencephaly-a clear fluid that surrounds the brain and spinal cord.
She also has with information for those regarding genetic testing specifically for COL4A1-related disorder information. This mutation disorder has about a fifty percent chance of inheriting the mutation from their parent. It has also been confirmed that mutations in theCOL4A1 gene occur in some patients with Porencephaly and Schizencephaly.
Subcommittee Members 2017 convention
Heather Leigh Jackson