Please make a donation to the Aplastic Anemia and MDS International Foundation this holiday season.
34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry.
When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.
As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.
“Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders
In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed.
Brandi was hooked on acting from the time she was three and played a munchkin in the Wizard of Oz. She eventually sidelined her first love to study political science at the University of Northern Alabama.
I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age).
Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders.