Amanda Johnson – Outreach Coordinator






In this role with The Chiari Project, Amanda helps the Chiari community through social media as she manages Chiari groups on Facebook and Instagram. By increasing her social media following throughout the years, she is now able to educate and inspire with informative posts as well as entertaining memes. Amanda is excited to be serving in this capacity to help mobilize the community in a global effort to create awareness and raise funds for more pain management research.

Amanda has a background in marketing, talent, and customer service which she secured during her time at WWE (World Wrestling Entertainment). She also has a background in education as she worked as an early childhood teacher and consulted with families about their young children ages 0-5. Amanda was diagnosed with Chiari Malformation when she was 30. Although she has been dealing with the symptoms all of her life, she finally had a name for the condition.

Amanda enjoys watching her sports teams; Patriots, Lakers, Yankees, and Avalanche. She also creates awareness for pitbulls and ADEM, another rare neurological condition. Amanda currently lives in Northern California with her pitbull, Dallas. Arf! Arf!



Ashley Lengel

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Ashley is a recent graduate of University of Cincinnati, but has struggled with chronic migraine her entire life, but felt the full effects of Chiari Malformation starting in her sophomore year of college. Since her decompression surgery, Ashley has been an active participant in the Bearcat Bands, in several student honorary organizations, and as a College of Engineering and Applied Science ambassador. She was selected to speak at UC’s freshmen convocation in 2016 to speak about her Chiari journey. Ashley still suffers but plans to pursue a career as a Physician Assistant in Child Neurology to help others struggling with neurological illness. She is currently in graduate school in Houston.

She is proud to volunteer her time for The Chiari Project as a leader in a motivational speaking initiative called BRAINSPIRE where she will continue to spread awareness for CM.


Rob Matar-Creative Consultant







Rob is an individual who gives a piece of his creative mind that improves the quality of life for those suffering the debilitating Chiari Malformation brain condition.


Maria McCutchen – Editor of TCP Quarterly










Maria McCutchen currently lives in Tennessee. She is a freelance writer and author of two books; including her memoir, “It’s all in Your Head.” She has been writing for many years; and for the past ten years she has been freelancing, writing articles for web content. She is an activist for those with brain cysts, and Chiari Malformation, and tries to help those who live with these rare medical disorders by educating them through her articles and her book.


Alicia Cheung – Visual Artist

Alicia Cheung is a talented artist that has been dealing with brain health issues for the last 18 years. From 1999 Up until 2016 Alicia has had an official total of 8 brain surgeries, 6weeks of radiation, 2 Brain Bleeds, 1 Brain Infection and was diagnosed with Chiari Malformation in 2014.  Along with her new diagnosis, she has also had the decompression surgery. Its been a tough road up until now, but Alicia never gives up, and always looks on the brighter side to everything. Alicia contributed an art piece in the 1st Brain Art event and also designed a meaningful purple ribbon for the organizations constant push of Chiari Awareness.