Writings about Members and the Organization

Members of the ECD Global Alliance are dedicated to helping raise awareness of Erdheim-Chester Disease.  The following links provide access to news articles and videos about ECD patients and their families.  If you would like to share a printed or televised story about ECD, please contact us about the publication to be included here.

Please note that there is great appreciation for all articles and information shared about ECD at the following sites and within the associated articles.  However, at times some of the facts concerning ECD can be misconstrued.  Please be aware some information about ECD in some articles may not be scientifically correct.

Miracle in the Corn Field


Jeopardy in Tunisia

Hiba Tohme Story – Francais

2021 Atnip Virtual Run story – Final

Noah Finds Courage & Purpose
At the very young age of six years, old Noah began showing signs of illness. After 12 long years of not knowing the cause of these lesions and his pain, the diagnosis of ECD finally came.  Despite what Noah was facing, he found a way to help others with a charity that helped others children just like him. Noah also now shares a message to his peers in the fight against ECD, “Don’t give up, keep fighting. The treatments they have now work and will make a difference in your life. Don’t be afraid to ask questions. Stand up for yourself.”

Time is of the Essence
Time is of the essence with this disease and it had been destroying my body unknowingly for 14 years. – by Patty Jackson

Climbing for the Cure
Family and friends gather on Father’s Day to reach new heights for research on rare cancer.

Unexpected Hope in Israel
An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.

A Ray of Hope Amid the Sorrow
The diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.

A Spiritual Journey Through ECD
The journey to a diagnosis can be stressful for the entire family. Positive support is critical to a patient’s outlook and response to the news. Despite the effects of COVID and the rarity of his newly found disease, William Dean finds his path and fights to stay strong for his family. – By William Dean

Walking With Hope
“I studied everything I could about ECD and thought I had a death sentence coming very soon.” – by Hugh Welborn.

Difficult Journeys Lead to Beautiful Destination    
I did every test under the sun to find out what it wasn’t.  Finally, an answer;  Erdheim-Chester Disease (ECD).

Fighting the Ultra Rare Erdheim-Chester Disease
Gerry Gallick shares his journey to an ECD diagnosis and how he has coped with the new normal.

I Am Rare
…after ten years of “What is going on, and I really am not a whiny woman,” I was diagnosed with Erdheim-Chester Disease.

Medical Miracle – The Result of a Mother’s Love
She had always wanted to be a mother, so it was a dream come true.  On the other hand, with all of her health issues how would it ever work.

Hope Past the Loss – English and Italian Versions 
Losing her husband to Erdheim-Chester disease does not stop this caregiver from having hope for others still fighting.  By Maria Assunta Di Pietro 

Rare Disease & Care in Italy – English and Italian Versions 
An Erdheim-Chester Disease family reports on the state of healthcare in a large region of Italy.  By Mariangela Melino 

We Watch and Wait – Living with Rare Disease  
Erdheim-Chester disease is not the same for all patients. By Tina Koslosky 

Rare Disease Baffled Medics 
Written by an ECD family with the intention to raise awareness. “Special thanks to Dr. Roei Mazor for his invaluable contributions to this article for its medical accuracy, and for his unwavering care and treatment of my dad over the past four+ years.” – Michael Friedlander 

Football, Family, and Rare Disease
For many, fall time means pumpkin spice and sweaters, for others it’s the pigskin and gridiron: Football!

Relay for Life in Nashville
Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all those curious about ECD.

Fighting Rare Disease as a Family
After nearly 10 years of struggling, “Then the real stuff started to kick in…”

Teamwork key to treating patient’s rare blood cancer
Former sports journalist Joe Lofaro has little memory of Oct. 23, 2015, when his son Daniel loaded him into a car at his Martin, Tennessee, home and said, ‘Come on, Dad, we’re going for a ride.”

Connecting Caregivers with Resources and Support
“When you become very good at caregiving, you have to understand the difference between a ‘laugh cry’ and a ‘sad cry’,” he said as he addressed a room of people going through similar situations.

On Rare Disease Day, Experts Say ‘DON’T GIVE UP’
Rare Disease Day raises awareness of disorders that affect very few of us.  An ECD patient in Washington shares her story of fighting to save her own life.

Tennessee ECD Patient Trying to Beat Rare Disease
Joe Lofaro raises awareness for Rare Disease Day in his community by sharing his story of battling this rare disease, no matter the obstacles.

Noah Finds Courage & Purpose

Last updated: July 8, 2022

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