TCAPP Team

TCAPP's dedicated team makes all of our programs possible, and brings tremendous knowledge and support to our organization. 

 

Patient/Parent Advocate for Newborns, Infants, and Toddlers
Christine Vencis 

christine.png

Christine Vencis is a board certified Family Nurse Practitioner and a mother of twin toddlers.She is happily married and enjoys spending time with her family! She has done missionary work in Tanzania working with orphans at Mother Theresa’s Missionaries of Hope, as well as spending some at The Village of Hope working with orphaned children infected with HIV/AIDS.

Christine’s children have been diagnosed with infantile rickets due to severe vitamin D deficiency as well Ehlers-Danlos Syndrome by the age of 5 months.Her family has dealt with multiple medical specialists and state departments to get this diagnosis.Her children were ‘passed off’ by multiple doctors at some the country’s best hospitals.Christine’s children were actually removed from her and her husband’s home, before this diagnosis was found, for suspected child abuse.The department of Children and Families found no fault of either of them and the children were returned home in record time! They are still battling the judicial system.
Christine is a strong and motivated mother and wife and has experience with hitting dead ends frequently in the systems that are supposed to help.Her goal is to help spread the word about misdiagnosis and being a true advocate for parents and their children.


Marketing
Tracy Butenhoff

My name is Tracy and I have EDS and a daughter with EDS and POTS.  My career is in marketing and I currently own a web design company (Cyberfluent). i'm excited to be able to contribute to TCAPP in some small way as I believe that they fill a vital need in our world of pediatric pain .  


TCAPP Youth Advocate
Julie

My name is Julie and I was diagnosed with RSD/CRPS at the age of 13 after a knee surgery. After having a ketamine infusion at the age of 15 I was in full remission for 3 ½ years. My freshman year of college I fell on my arm and I developed RSD/CRPS in my left arm after that. My leg is still in remission, but I still have the pain in my arm. I am now almost 21 years old and full time college student. I’m also a critical care tech at Primary Children’s Medical Center. I am studying nursing and would like to continue working in pediatrics once I’m a nurse. Recently I have also started having severe GI issues and some cardiovascular issues too. I work hard every day to try and overcome these challenges and live as close to a normal life as possible. I am thrilled to join TCAPP as a youth advisor because I know how much of a difference having someone who truly understands the pain you are going through makes.  Contact Julie at julie@tcapp.org.


TCAPP Education Advocate

TCAPP is lucky to have some educational advocates with a wide variety of experience in the educational field. If you are looking to touch base with someone to help guide you in the process of an IEP, 504, or in arranging rights for your college born kid, email us at and see if we can help.


Medical Patient Advocate
Susan Shmoys, M.D.

Medical Patient Advocate: Susan Shmoys, M.D.: Susan Shmoys is a former specialist in Maternal Fetal Medicine who has a 17 year old daughter who is currently in remission from her second prolonged episode of CRPS. Although never officially diagnosed with dysautonomia, her daughter has also had frequent episodes of “vasovagal” syncope. Susan herself suffers from chronic pain as well as several other medical issues.