News & Events

What It’s Really Like To Be Chronically Ill

What It’s Really Like To Be Chronically Ill By:  Laura Anne, thoughtcatolog.com Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to… 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 »

That Space Between Us

You will always be my baby, my child, my soul – you are part of me. Your challenge is my challenge, your illness is my illness, and your pain is my pain. I would give anything to trade places and take what you must endure each day. I would do anything to make all the… Continue Reading »

Making Hope When the Medical System Can’t (Part 2)

Deborah J. CornwallHuffpost Healthy Living, July 12, 2014 Autonomic disorders, like POTS (Postural Orthostatic Tachycardia Syndrome, sometimes called simply Postural Tachycardia Syndrome) and Neurocardiogenic Syncope involve body systems that are supposed to work automatically — controlling your heartbeat, blood pressure, breathing, thinking, temperature, digestion, vision and more — but don’t work as they should. Such conditions affect between 500,000 and… Continue Reading »

Invisible Illness: How to Sustain Hope?

By:  Deborah J. CornwallHuffpost Healthy Living, July 12, 2014 Think about your everyday life — how taking a run, or walking your dog on the beach, or socializing with friends are just part of a normal day. How you share daily responsibilities with others. How you set long-term goals and arrange your life to pursue… Continue Reading »

Walk and Bake Sale to Benefit TCAPP

Rosemary Wiser, one of our first TCAPP Kids, is hosting a walk and bake sale to raise awareness for RSD/CRPS.   For those that don’t know, RSD/CRPS is a condition of the nervous system that causes serve nerve pain among other things. Rosemary has been living with it for years now and not enough people… Continue Reading »

Tri-City Senior Overcomes Rare Disorder

By Maggie MenderskiStaff Writer Posted Jun. 8, 2014 @ 9:30 pm  BUFFALO — For Kaylee Edwards, the biggest high school test often was just getting out of bed in the morning.After she overcame that obstacle, the senior at Tri-City High School had to worry about making it through first hour and the possibility of fainting on… Continue Reading »

Remember the Mothers of Sick Children

By:  Courtney Schmidt is medical communications editor, Arnold Palmer Hospital for Children, Orlando, FL. She blogs at Illuminate.“Motherhood is the hardest job you’ll ever love.” I’m not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with a serious illness…. Continue Reading »