News

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 »

Suggested medical work-up for those traveling to see Ehlers Danlos specialists

The following document was agreed upon by physicians who attended the 2014 TCAPP Physician Think Tank on Ehlers Danlos Syndrome (EDS) and Co-Morbid Conditions. This worksheet is only a guide for patients (and their local physicians) who are traveling to see an EDS specialist. This guide is not meant to take the place of, or to override the recommendations of one’s primary care physician. The… Continue Reading »

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.

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 »

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 https://genelex.com/patients. 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 https://www.mitoaction.org/awareness 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 »

TCAPP Physician Conference Opens Up to Patients

Registration is Closed TCAPP IS EXCITED TO ANNOUNCE THAT WE ARE ABLE TO OPEN UP OUR 1 DAY CONFERENCE,  PAIN IN PEDIATRIC WITH COMPLEX CHRONIC DISEASES, TO PATIENTS AND THEIR FAMILIES. Join us September 13th in Washington DC at the Key Bridge Marriot to hear Dr. Francomano, Dr. Henderson, Dr. Teasely, Dr. Rowe, Dr, Niksch,… Continue Reading »

Grants available to help pay for children’s health care costs

Johnson City Press August 12th, 2014 1:17 pm by STAFF REPORTS NASHVILLE — The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered or not fully covered by a commercial health insurance plan. Qualifying families can receive up… Continue Reading »

Tell your doctors about this conference: Pain in Pediatrics with Complex Chronic Disease

Would you like your doctors to understand more about your child’s complex chronic disease? Invite them to Pain in Pediatrics with Complex Chronic Disease.  This one day class with CME’s will be taught by: Timothy Bunchman, MD Professor & Chief of Nephrology and UroRenal Clinic, Virginia Commonwealth University Children’s Hospital of Richmond. Clair A. Francomano,… Continue Reading »

Would you like to Guest Blog?

We hope you enjoy our blog, Parents Talk! Since there is no manual for how to parent a child in chronic pain, or how to navigate the sometimes seemingly endless abyss of physical and emotional challenges, we have created this space to explore and discuss the unique parenting and family issues that so many of… Continue Reading »