News & Events

Rare Community Mourns a Mom Pushed Too Far

DM. Sullivan This blog was written in 2017 to channel some grief and try to raise awareness of a growing problem in the rare disease and Ehlers Danlos Community. It hurt too much and felt too scary to publish at the time.  Today, as this brave family prepares to release their story on Netflix in… 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 »

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 »

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 »

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 »