We Are RARE Board and Committee

  • We Are RARE Executive Board

Tricia Dennis Founder

           Founder/Tricia Dennis/research 
                                                           

Tricia Dennis is mom to Super Noah and founded We Are RARE ( Formally Noahscart) in 2008. She also serves on the board as Co Chair and Mayors representative for the Orange County community and  advisory board.

Co-Author of Schizencephaly: Angels with Broken Wings and author of A Place in the Sun; Tricia’s specialty is Research/Public speaking, Cannabis education 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.

Contact:

Tricia@wearerare.org

(407) 617-4111

 

ron

Ron Casella Co-Founder/Event coordination

Ron Casella  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.

Contact:

Ron@wearerare.org

(407) 925-6089

James Payne

Treasurer/officer

 

Stephanie Ziemann Vice President

stephanie

                  Research specialist

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.

Contact: Stephanie@wearerare.org

 

 

heather

Heather Leigh Unilateral Schizencephaly RARE committee member/ Support/Media and communications

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.

Contact:

Heather@wearerare.org

 

Krisine King

Rare case committee member Louisiana, Mom to Jackson understands severe cases of Schizencephaly involving Hydranencephaly-a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles

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.

Kristine@wearerare.org

 

 

Kindra Mumma/ fundraising /event coordinator 

Kindra located in Illinois  is mom to Johnny who has Unilateral Schizencephaly.  Kindra is an officer/event coordinator and event planner with We Are RARE and assists in convention planning as well as upcoming events and overall board development

 

Katy Baatz

Officer

Mom to Andrew Katy is an amazing asset to the RARE team

Robert Roundtree Director of strategic partnerships

Bobbe Fisher /secretary


Subcommittee Members 2017 convention

Tawanda bennet

Jen Ortiz

Heather Leigh Jackson

Paul Fincher

Kim Stankawitz

Paul Fincher

 

 

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