News & Events

TCAPP Newsletter

Read about our Pediatric Pain Summer Camp, Massachusetts Legislation that May Benefit the Rare Disease Community, & TCAPP’s Successful Polar Plunge. Click here for Newsletter

The Polar Bear Plunge – Click here for video

Here is a short video of TCAPP’s 2015 Polar Plunge in Newport, RI! It was a great time for everyone who ventured out into the cold. Dr. Chopra raised over $1,000 for TCAPP! Thanks to everyone who donated to TCAPP in honor of Dr. Chopra and everyone who came to the Polar Plunge – we appreciate you.

CFS and Related Conditions, Peter C. Rowe, MD.

Author: Peter Rowe, MD Pediatric Internal Medicine Specialist at Johns Hopkins Hospital As a Chronic Fatigue Specialist, this topic will focus on pain and chronic fatigue and multi-faceted disorders that are likely causing it from sleep disorders, to connective tissue disorders, to autoimmune conditions.

Immune system disruption The search for answers

Stanford Medicine By Kris Newby Illustration by Jeffrey Decoster Erin keeps a photo of herself playing soccer in the living room of her tidy cottage near San Francisco Bay. It captures her image frozen in time and space, hurtling like a comet between two opponents, her white-blond ponytail fanned out like flames. “She was a… Continue Reading »

PTSD and Chronic pain

Dealing with chronic illness and navigating the medical system can be extremely stressful on families. When a child has a condition that is not easily recognized, treatment options are not clear-cut, or required modifications are not well understood, it only adds to the pressure.  Sadly, many TCAPP kids have experienced and been diagnosed with post-traumatic… Continue Reading »

Brain attack An explanation for a mental illness that strikes out of the blue

Stanford MedicineBy Erin DigitaleIllustration by Jeffrey Decoster  On March 2, 2009, something snapped inside Paul Michael Nelson. In the middle of the night, his parents found the 7-year-old boy stabbing the door of the family’s home office with a kitchen knife, trying to get at a computer that was off-limits after his bedtime. When they stopped… Continue Reading »

2014 Think Tank Video Introduction

TCAPP is pleased to be able to share with you videos of our 2014 Think Tank that took place last month in Washington DC.  We are hopeful that the information presented by these doctors, many a part of the TCAPP Medical Advisory Board, will bring new insights into medical conditions our TCAPP community is struggling… Continue Reading »

Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all

The Washington PostBy Lillie Lainoff September 12 Lillie Lainoff is a sophomore at Yale University. In 2008, it was all about vampires. In 2011, it was dystopian societies with corrupt governments. And now, 2014 seems to be the year of teenagers with fatal diseases. As far as Hollywood obsessions go, the first two are pretty benign…. Continue Reading »

TCAPP and Genelex: Partners in battling pediatric pain

TCAPP is proud to partner with Genelex in the important battle against pediatric pain.  If your child uses medication to help with pediatric pain, we encourage you to evaluate their personalized prescribing system at The Genelex Blog, PGx in Practice September 11, 2014 It’s tragic when a young life is haunted by the specter of… Continue Reading »

Power Up for Mito

During the third week of September (the 14th through the 20th), the Mito community comes together to raise awareness for Mitochondrial Disease Awareness Week. Visit Mito Action’s website at for ways you can be a part. Why is Awareness Week important? “Thousands of families face the reality of living with mitochondrial disease. During the third… Continue Reading »

Paving The Way! Back To School For Kids In Pain

When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate. I woke up this morning, ignored the pit in my stomach and made THAT call. You know, the call to the Special Education Director to give an… Continue Reading »