News & Events

When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children

              When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children  By: Dr. Jessica Nitschke – Research Fellow at Stellenbosch University Three years ago, Kendal’s two young sons (then aged 4 and 6) were undergoing care for life-threatening genetic conditions in a… Continue Reading »

Send A Smile Recipients

TCAPP’S Send A Smile program is a very popular program. We send out gifts, gift cards and/or stuffed animals to children who are having surgery, a medical procedure, or sometimes just to let them know we are thinking of them. If you would like to nominate your child for a “Smile” please send an email… Continue Reading »

SICKLE CELL DISEASE

What is Sickle Cell Disease? Sickle cell disease affects nearly 100,000 Americans. More specifically, sickle cell disease occurs in 1 out of every 365 Black American births. Also, 1 in every 13 Black babies are born with sickle cell trait. Approximately 8% of Black Americans are directly affected by sickle cell disease; the percentage is… Continue Reading »

When Medicine Attacks Motherhood

mom comforting child

By. DM Sullivan My phone has been blowing up all week. It happens every May. This year it seems to be a little more intense, but I know the reason – Mother’s Day. I am a rare disease mom and patient advocate. I have spent the last ten years supporting families who live with rare,… Continue Reading »

Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome

By DM Sullivan  2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment… Continue Reading »

Why Complex Medical Families Are Grateful To Justina

By DM Sullivan This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better. Rare disease… Continue Reading »

Dr. Chopra’s Annual New Years Polar Plunge For TCAPP Kids

Taking the Plunge to Benefit Pediatric Pain: A Doctor’s New Year’s Ritual Raises Awareness On The Plight Of Young Pain Patients. Every New Year’s Day, as large and spirited crowds run toward the frigid ocean waters in Newport, Rhode Island, one man’s jump is especially meaningful. Pradeep Chopra, MD, is a Rhode Island pain physician… Continue Reading »

Our First Year At Camp

For the last two years, Sue and Aurora reached out to me and asked if my son would like to attend Summer Camp at CCK. The careless fun of childhood and socially active teen years are some of the first casualties in a sting of losses for these kids who live day to day, in… Continue Reading »

The Biggest Lesson That I Learned

By Michaela Sullivan May is Ehlers Danlos Awareness Month. As everyone with a chronic illness knows, one of the hardest things is that you never know what the next day will bring. It could be a great, low pain day or a terrible day where you can’t even leave your bed because the pain is so… Continue Reading »

Why Grey’s Anatomy Did Not Blow The Ehlers Danlos Episode

By DM. Sullivan ABC’s medical drama Grey’s Anatomy’s recently aired an episode, Falling Slowly, which featured a story line about a young patient with Ehlers Danlos Syndrome, and a grateful EDS Community has been abuzz on social media ever since. Thank you for finally giving us a voice! Validation at last! Awareness! Well, sort of……. Continue Reading »

Taking Chronic Illness To College

By Michaela Sullivan College is a chance to start fresh. For most teens, you’re going to a place where very few people know personal details about you. You start your first semester as a freshman, and you have a clean slate. For some, this is good. The mistakes made in high school don’t follow them…. Continue Reading »