Patient Stories


Parent Perspective: Raising a Child with Thalassemia

Wednesday, May 13th, 2015

May 13, 2015 –  Amy Long, the mother of a child with thalassemia, has generously shared her experiences with raising her daughter, who was born with thalassemia. CAF thanks Amy for allowing us to post this warm and loving story. Raising a child with thalassemia is both devastating and rewarding. By having a child with […]

Bringing Joy to Their Parents

Wednesday, March 25th, 2015

March 24, 2015 – Nicole Walsh and Rupert Ho have adopted two children with thalassemia from China.  CAF talks with Nicole below about their experience as adoptive parents. CAF: When did you adopt your children? Nicole: We adopted our son, Aaron, when he was 3 years old, and living in an orphanage in Southern China. […]

“A Wonderful Journey” – Tracy Antonelli Talks About Adopting Children with Thalassemia

Tuesday, February 24th, 2015

February 24, 2015 – Tracy Antonelli, an individual with thalassemia, and her husband have adopted three children from China over the past several years. Like Tracy, her adorable daughters have thalassemia. Below, CAF talks with Tracy about her experiences in going through the process of adopting children from another country. CAF:  Tell us a little […]

“Stronger Than We Think” – Joelle Zarcone on Running a Half Marathon

Monday, February 23rd, 2015

February 23, 2015 – On March 8, Joelle Zarcone will be running in the San Diego Half Marathon to raise money for CAF. Below, CAF talks with Joelle, a person with thalassemia, about her decision to participate in this endurance event.  CAF: How did you decide to participate in the San Diego Half Marathon? Joelle: […]

Patient Panel Explores Living with Thalassemia

Thursday, October 9th, 2014

October 9, 2014 – One of the most praised presentations at this year’s CAF Patient~Family Conference was the patient panel, during which several patients shared their experiences in living with thalassemia. Among this year’s participants were Aaron Cheng, Anish Goel, Chi Pham and Jaimee Versace. “In my presentation, I emphasized how important it is for […]

Go Get ‘Em, Tiger! One Patient’s Approach to Thalassemia

Monday, October 6th, 2014

October 4, 2014 – Marsha DeSalvatore understands the saying about making lemonade when life hands you lemons; this talented and vivacious woman has learned to use the fact that she has thalassemia as a way to express herself through comedy and improvisation. In doing so, she helps herself and educates others about what it means […]

Thalassemia Patient Authors “Transfusion: A Patient Survival Guide”

Tuesday, September 9th, 2014

September 9, 2014 – Josephine Bila, an individual with thalassemia, has written a book, “Transfusion: A Patient Survival Guide.” CAF speaks with Jo about this project below. CAF: Tell us a little about “Transfusion: A Patient Survival Guide.”  What motivated you to write it, what is it about, etc.? Jo:  I was born with beta […]

New Story Added to CDC Thalassemia Flickr Album

Thursday, August 28th, 2014

August 27, 2014 – The Centers for Disease Control and Prevention  (CDC)’s social media platform on Flickr has added a new photo and story to its “Personal Stories of People Living with Thalassemia.” The new photo and story, which focuses on Jasvinder Singh, can be viewed by clicking here.  The entire album can be accessed […]

Thalassemia Patient Awarded Asian Pacific Community Fund Scholarship

Wednesday, January 23rd, 2013

January 23, 2013 – Aaron Cheng, a sophomore at Harvard University who has beta thalassemia major, has been awarded a 2012 Scholarship Award from the Asian Pacific Community Fund in association with Verizon. He is one of five recipients in this awards cycle. The Asian Pacific Community Fund partners with Verizon to financially assist students […]

Patient Profile: Khai – Healing, Halfway Around the World

Wednesday, December 19th, 2012

October 19, 2012 – When Heather and Aaron Ayris decided to welcome a nine-year old boy with thalassemia into their home for six weeks, they hoped their hospitality would help improve his health. They wanted to show their guest a good time and lift his spirit. But it’s the Ayris family whose lives were changed […]