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.

2017

Caitlyn Captures Hope
“I, Caityln Walch, think ECD is very important. My grandpa was diagnosed with ECD about 2 years ago. That didn’t stop him though. Ever since I was born my grandpa took care of me so I will take care of him. And that’s why ECD is so important to me. Don’t give up because of ECD, it should only make you try harder.”

Dawn Smith, ECD Survivor

The Fresh Faces Project Stands With ECD Survivors: These Are Their Stories
ECD survivor Dawn Smith shares her journey living with this disease.

Patient Participates in Radio Interview for ECD Awareness Week 2017
An ECD patient, along with friends and family, set out to raise awareness of ECD and funding for the ECDGA with a local restaurant fundraiser! This radio interview helped spread the word.

The Boy with Erdheim-Chester Disease
An inspiring story of a 15-year-old diagnosed with ultra-rare blood cancer found predominately in adults.

Erdheim Chester Disease Experience from a Chinese Patient: 2012 to 2017
A Chinese ECD patient and ECDGA volunteer tell about his journey with this rare illness.

ECD Global Alliance Volunteers Recognized During National Volunteer Week
From April 23 – 30, volunteers from around the world were acknowledged for their contributions to the ECD community.

Drug Trial Blog Reveals What It’s Like to be a Participant
ECD Global Alliance community member writes on his involvement in the Dabrafenib and Trametinib therapeutic trial at the National Institutes of Health.

2016

DeRidder Thursday Study Club Supports Efforts to Fight Erdheim-Chester Disease
ECD Global Alliance president and founder, Kathy Brewer, spoke to a local club about the progress of the local non-profit.

N.B. woman calling on government to cover cost of life-saving drug
“It’s really hard knowing there is a drug out there that if I can’t get then my life is going to be over.” – Canadian patient with Erdheim-Chester Disease

Strength in Faith: Local pastor fights through illness with scripture
Hope, faith, and community come together for this Erdheim-Chester Disease patient to strengthen his fight against this debilitating disease.

The Power of Faith
Holding strong to faith gives hope when terminally ill. Gerry Gallick tells the story of how he was diagnosed with a rare incurable blood disease, Erdheim-Chester Disease.

If I Die Tomorrow, God is Still in Control
“Despite the change that sickness has brought into Janet’s life, she welcomes each new day with open arms, and keeps the things that truly matter to her close by. This passage was written based on her everlasting optimism, and her radiant smile.”

Newmarket man with rare disease must battle system for coverage
Canadian patient tells about his journey with ECD and of hopes for a better healthcare system.

Stafford teen to be pilot for a day
A teenager suffering from Erdheim-Chester Disease gets to spend a day with military pilots and aircraft and pilot an aircraft simulator in his own personalized flight suit.

2015

The Exceptional: What Miraculous Recoveries Can Teach Us About Beating Cancer
An ECD patient is interviewed and quoted in Popular Mechanics on how vemurafenib has changed her life.

Fundraiser for Gurnal Jones
A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal Jones, who is battling a rare disease called Erdheim-Chester.

Rare disease marks first awareness week Sept. 14-18
This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention to the medical condition but raising money for research.

Mason City will serve as hub for worldwide rare disease fundraiser
Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness of the rare disease. Bob was diagnosed with the rare Erdheim-Chester Disease following a knee injury.

2014

2nd Annual International ECD Medical Symposium Discussed in NIH Newsletter
The August 2014 NIH Clinical Center Newsletter featured a story about the planned 2014 ECD Medical Symposium hosted by the NIH, in partnership with the ECD Global Alliance.

Bold Initiative to Transform Cancer Care
A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently enrolled in the vemurafenib trial. Rita’s is a remarkable story that begins at the 2 minutes, 22-second mark of this 5-1/2 minute video.

Bonnie Schulz faces the Erdheim-Chester Disease
A picture and story (story not available online) about Bonnie Schulz, a patient living with ECD.

Difficult to diagnose disorders gain support
A newspaper article was written about Leslie Adler, and her experiences living with ECD.

2013

2012

Eva Melissa Barnett- Daddy’s Song
The daughter of an ECD patient has written and performed a song about her dad.

ECD WaltComer Video
Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.

Blind newlyweds take life in stride despite challenges
An article about Kit, an ECD patient, and her husband, Rich.

NIH Rare Disease Day 2012
NIH film documenting Rare Disease Day at the NIH on February 29, 2012. The first part of the video shows an ECD display and one of our members talking with Dr. Juvianee Estrada-Veras.

2011

The former Bradford doctor having to adapt to a life-changing condition
Describes the exercise program, and related benefits, of one ECD patient, a former doctor who lives in the UK.

A Rare Disease Leaves a Man Feeling Blessed
An inspirational first-person account from someone who is living with ECD.
*A version of the “A Man Blessed” story from above that does not require a subscription to the newspaper.

Erdheim-Chester Patient Gets Lungs
A short article appeared in the Japanese news media in September 2011. It states that the first lung transplant to an Erdheim-Chester Disease patient occurred at Okayama University Hospital in Japan.

Angel Hearts Launches in Seymour
An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit organization called, ‘Angel Hearts’. The organization is dedicated to helping families who are in need because of medical conditions, including illness and injury.

Prescott Valley woman’s rare disease triggers fundraiser for research
An article about a patient and her husband, living in Arizona, who are working to help raise awareness of ECD and fund ECD research.

First Annual Gary Brewer Memorial Run
A local news story about a high school student who is working to raise money for ECD research.

POKIN AROUND: Cottleville, Missouri couple blindsided by rare, deadly disease
A local news story about a couple in Missouri who are learning to cope with Erdheim-Chester Disease.

Almost Alone: Jefferson County man is one of the few with Erdheim-Chester Disease
A local news story about a Hillsboro, Missouri man and his journey related to Erdheim-Chester Disease.

ECD Patient Meets Future Husband at a Scuba Dive Event
A news story about a young woman with Erdheim-Chester Disease (see story below) who met her future husband at a scuba dive event.

ECD Patient Interview: Long road to diagnosis for a doctor with a rare condition
A news story from the Yorkshire Post about a doctor who has been diagnosed with Erdheim-Chester Disease. He discusses his experiences in living with ECD.