TCAPP’s dedicated team makes all of our programs possible, and brings tremendous knowledge and support to our organization.
TCAPP Youth Advocate
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 firstname.lastname@example.org.
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.
Patient Comfort Advocate
Cheryl Myers – Karen Sugar
Cheryl and Karen are moms of a children living with a chronic pain disorder. They personally know the stress this can cause on the child and the family alike. They like to help out by bringing a smile to those in these situations with our Send a Smile program. Cheryl and Karen are fabulous at making sure that kids that are hospitalized get a gift to know they are not alone in their struggle.
TCAPP Education Advocate
Advocate/Consultant Ph.d. Anita Stipnieks, Retired Assistant Superintendent
TCAPP Teenage Legislative Advocate
Karen Richards is a 17 year old high school student at Newman School in Boston, MA. She is affected by a Connective Tissue Disease of unknown determination that affects her blood vessels in her brain, her joints and her spinal structure. She also has Mast Cell Activation Disorder, RSD/CRPS, Common Variable Immune Deficiency (CVID), Mitochondrial Dysfunction, and Benign Intracranial Hypertension. Karen Richards enjoys writing, is a published author and has the website: www.sweetlemonpies.com
TCAPP Legal Consultant
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 bound child, email us and see if we can help.