We Are RARE Board and Committee

  • We Are RARE Executive Board

Tricia Dennis Founder

Tricia Dennis
Founder/ CEO

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

 

Robert Roundtree III Vice President/ Director of marketing

Robert was introduced to RARE at a pro cannabis event in Florida in 2015. Robert brings knowledge of cannabis treatment and laws associated with Florida. Connected to Medical Marijuana doctors and providing resources to families, Robert and Tricia will be providing case studies associated with treatment of whole plant and Schizencephaly as well as continuing the efforts to make cannabis available for patients needing it. Robert also works with the foundation Buds for Vets.

robert@wearerare.org

 

stephanie

Stephanie Ziemann Director/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. Stephanie is our executive director.

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

 

Mike Crider officer

Mike, 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 fundraiser with the sale of 5k merchandise. Mike is located in are our North Carolina Outreach and community events area.

Contact:

Mike@wearerare.org

 

Krisine King  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 

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


Subcommittee Members 2017 convention

Tawanda bennet

Jen Ortiz

Heather Leigh Jackson

Paul Fincher

Robert Roundtree

Kim Stankawitz

Paul Fincher

 

 

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