by Asmaa Javed | Dec 31, 2024 | Uncategorized
“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.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
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.”
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
What one UK family faced with Erdheim-Chester Disease. By Chesnee Green September 13, 2018 Erdheim-Chester Disease (ECD) patients are fighting a daily battle with their mental and physical health. Likewise, the caregivers are also fighting a daily battle. Many times,...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
One of the biggest American Cancer Society events of the year hosted an Erdheim-Chester Disease team! By Chesnee Green, September 21, 2018, Nashville TN. – Erdheim-Chester Disease Global Alliance (ECDGA), a non-profit based in DeRidder LA, continually searches for a...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
A passion for football, and brothers love, showed one rare disease that family is first. Written by Chesnee Green September 1, Columbia, MO – Fall is upon us! For many this means pumpkin spice and sweaters, for others it’s the pigskin and gridiron: Football! For the...
