Honorary Ambassadors Who have Served
Meet Lindsey
Hi! My name is Lindsey. I am a twenty-one-year-old nursing student at New York University. I was four years old, about to turn five, when I was diagnosed with Langerhans Cell Histiocytosis in my skull.
I was very fortunate because the tumor was removed with surgery, and I haven’t had any complications since the procedure. Doctors inserted a bone plate and four screws to cover the void in my skull.
I am incredibly grateful to be connected to this special, rare disease community. For many years until I contacted the Association, I had never met anyone who had fought Histiocytosis, like me. Being able to talk to other histio Warriors and hear their stories has sparked a new flame inside of me. As a nursing student who plans to specialize in pediatric oncology upon graduating, histio Warriors are a source of inspiration for me. They are truly incredible, strong people. I want to help treat and care for these patients in the future.
I also want to offer words of hope to the histio community-
Don’t be afraid to reach out to others- histio Warriors and/or caretakers. Histiocytosis is an emotionally challenging and isolating disease, so support is essential. There are many resources available on the Histiocytosis Association website. I also want to encourage all histio warriors to continue to have hope and never stop reaching for your goals. Although Histiocytosis was a speed bump for me and my family, I believe my experiences in the hospital made me a more empathetic, caring person who strives to live life to the fullest.
Meet Joe (Histio Angel)
Over the past six and a half years, Joe fought the disease. Knowing this ultra-rare blood cancer could take him at any time, he committed himself to be one of the world’s leading awareness educators and advocates of this histiocytosis disease.
He had been to two continents and numerous states discussing the disease with the world’s leading doctors and educators, patients and caregivers.
Before ECD, he was an author of a book, an award-winning sports information director at the University of Tennessee at Marin and an award-winning editor at the Weakley County Press newspaper.
Joe was a wonderful person inside and out. He loved his role as a histio ambassador and proudly wore his “I Am A Histio Warrior” t-shirt. He was passionate about our mission to raise awareness about histiocytosis shown by his involvement over the past two years.
He exemplified his role as a histio ambassador by leading two ECD Facebook support groups each week, attending our regional meeting in Memphis in 2021, and participating in relay for life day by displaying our histio blue ribbons everywhere. He sold “Soap for Hope” as a fundraiser and last summer organized a histio table at the 2022 Soybean Festival health fair.
He set an example for us all and will be most remembered by us for his genuine care for others, bravery and perseverance, openness, kindness, silly sense of humor and love. Joe’s words emulate the caring nature that he exuded. “I am here for each and every one of you and I will help anybody at any time.”
We will miss you, Joe!
Meet Sydney
Sydney was diagnosed with LCH at the age of 10 years old. She had lesions in the orbit around her eye and upper spinal cord. The Giving Rocks Foundation originally started in 2007 as a passion project by 10-year-old Sydney Martin after a diagnosis of LCH has evolved into a successful 501(c)3 nonprofit. After researching LCH, Syd and her family were shocked to find that the potentially fatal blood disease was grossly underfunded with little research devoted to it. Sydney started selling her unique rock necklaces made from the shores of Lake Michigan to raise money for medical research, and Syd Rocks was born. Although she won her battle against LCH, Sydney was still passionate about finding a cure. The charitable business expanded to Giving Rocks Foundation, an organization with a powerful mission to eliminate all pediatric cancer, with a focus on LCH. Giving Rocks Foundation donates 100% of its proceeds to LCH research, with the belief that every rock can lead to a cure. Giving Rocks are sold on the HAA website today!
During her treatment for LCH, Sydney found a sense of belonging on the Oncology floor at Lurie Children’s Hospital in Chicago. She felt incredibly supported by her hospital peers, her medical team, and most of all by her Certified Child Life Specialist (CCLS). CCLS’s are health care professionals who help children and families navigate the process of illness, injury, disability, trauma, or hospitalization. Sydney’s experiences as a patient informed her decision to embark on a career in healthcare. Sydney received her Master of Science in Child Development from Erikson Institute and became a CCLS in 2021. She worked as CCLS on the General Pediatrics Unit at Rush University Medical Center from 2021-2023 providing comprehensive medical, social, and emotional support for patients and families. In June of 2023, Sydney began a new role as a Donor Workup Specialist at NMDP, formerly known as Be The Match. As a donor workup specialist, she helps healthy marrow and stem cell donors throughout the donation process. Additionally, she uses her healthcare background to educate donors on the donation process and shed light on the patient experience. She loves helping to facilitate lifesaving transplants and making sure donors feel proud of themselves for offering a lifesaving gift to a patient in need.
Sydney’s experience with LCH informed her career path and she is so excited to bring her experiences to the forefront as a Histio Ambassador!
Meet Barb
Our family’s Histiocytosis journey began more than 30 years ago when our toddler son Brent developed a waxy scalp rash. It’s astonishing to think that what appeared to be a benign concern would actually be the first signal of something so much more serious — a disease that would damage the bones in his face, create a tumor behind his left eye, and ultimately invade his central nervous system, requiring more than eight years of treatment to control. Along the way, Brent endured multiple regimens of chemotherapy, radiation to the tumor and to his brain, and numerous surgeries, including a 9.5-hour craniotomy with facial reconstruction to repair the damage to his face caused by the tumor.
Finally, an old chemotherapy used in a new way stopped the Histiocytosis from progressing. This made Brent the index patient for a treatment that helped many other kids with CNS disease.
Throughout it all, we were fortunate Brent was under the care of Dr. Ken McClain at Texas Children’s Hospital in Houston. Talk about perseverance: He never stopped trying to stop Brent’s disease, relying on his colleagues at the Histiocyte Society when he needed a fresh perspective, new ideas. or someone to help him evaluate yet another MRI image.
Today, Brent has been treatment-free for 22 years. He is an Eagle Scout, holds two associate degrees, and works full-time in accounting. That’s not to suggest he came through this ordeal unscathed: He has some processing speed issues, he developed epilepsy when he was 10 (it’s well-controlled, thank goodness), and he’s shorter in stature than expected at birth. Still, he’s a remarkable, empathetic young man with a big heart and a great sense of humor.
As for the Histiocytosis Association, it hadn’t been around very long when Brent was diagnosed in 1993. And, of course, there was no internet at the time. Between the time the pediatrician said she thought Brent had histio and the diagnosis was confirmed, the only thing we had to rely on was my husband’s copy of Grey’s Anatomy (the reference book; my husband is a retired R.N.), which described the disease as a nearly always fatal condition of the lungs. Fortunately, once Brent became a Texas Children’s patient, we learned about the Association, and my frequent calls with Jeff Toughill began. His very personal support is something I'll always be grateful for.
Throughout the years, I’ve watched the Association evolve and mature. I’ve been involved through fundraising and writing some of the group’s early outreach materials (I’m a freelance writer with years of marketing experience). I’m excited to have formalized my relationship and am looking forward to having an impact on awareness and advocacy.