Honorary Ambassadors Who have Served
Meet Lindsey
Hi! My name is Lindsey. I am a nurse at Children's Hospital of Philadelphia. 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 Michelle P.
My journey began with my husband “not feeling well”. After several months of doctor visits ,he collapsed in full system failure. We were airlifted to Seattle after emergency treatment in Spokane had failed and Dave was dying. Dve was placed in the ICU on support as his body was shutting down.
One week and hundreds of tests later Dave was diagnosed with HLH. Dave and I spent several weeks there and on this very weekend Memorial Day 2018 we decided to return to Spokane where our support system and fellow firefighter family were. Dave and I fought a valiant fight until on 16 December 2018 he made the decision to leave this
world . Family, friends and each engine company from the Spokane Valley came to pay their last respects to the dad, brother, friend and Captain they loved.
In the quiet time before we started the medication regime Dave, through his bipap mask, hoarse and struggling to speak, gave his last orders as Captain. He asked to never be forgotten and to find a way to save at least one of his fellow firefighters who might contract HLH so his death would not be in vain.
On the morning of 17 December 2018, after lifting his mask as he requested, I held him as he passed. 08:47 I pronounced him as passed. And my journey began. As I prepared to honour him with a stair climb in his gear I contacted the Histio foundation and am now an ambassador dedicated to educating medical professionals, comforting those who mourn and fighting alongside other Histio Warriors.
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 Carol
My name is Carol, I am 22 years old, a university student pursuing my undergraduate degree, and I am a Histio Warrior.
At the age of 10 months old my molars had started to grow in; I was also consistently getting sick. My mom didn’t know why, so she did what any mom would do and took me to the doctor. I was treated with amoxicillin, which later led to an allergic reaction. I had a lesion in my eye and a lesion in my spine and a tumor in the right side of my mandible. After more tests, and scans my mom was finally given an answer. The diagnosis that my mom received was Langerhans Cell Histiocytosis.
At a young age I was treated with chemotherapy. 6 months after I relapsed and was given another 6 months of chemotherapy. At the age of a year and a half I lost complete vision in my left eye and currently battle the long-term effects of LCH, which are Diabetes Insipidus, Vitiligo, growth hormone insufficiency, and a glaucoma in my left eye.
Growing up I was bullied a lot for looking different and being treated differently. As I reached my last year of high school, I decided that instead of hiding what makes me unique, why not share it? I told myself maybe one day someone who is going through what I went through may hear my story and be comforted knowing that they are not alone, which is why I became a Histio ambassador!
Meet Teresita
Hello! My name is Teresita. I studied Economics in Cal Poly Pomona, I am a Social Media Marketing Strategist, and I am a Digital Illustrator for The HLH Advocates.
I became a Histio Ambassador after my sister-in-law passed away from HLH in 2019. She was only 22 when she passed. Like many in the community, doctors could not figure out what was wrong with her. She would continue to get misdiagnosed with other common diseases, but doctors would eventually have to go back to square one. It wasn’t until rare disease specialists went to the hospital to run further tests and ultimately concluded that she, in fact, had HLH.
I have always known that my journey in life is to help others who are in need of help. I would always try to figure out in what ways I could help but never knew where to begin. I always felt guilt for not pushing to see her more during her months in the hospital. Life got in the way, especially with school and work, that I didn’t dedicate more time to check in on her. The times I did get to see her, she would say how badly she wanted to go home, but you could see that she was trying to hide the pain so she could no longer be at the hospital. I had family members pass away, but my sister-in-law had the most unfair and worst passing from anyone I have known. My sister-in-law went through a tough battle, and after she passed away, I felt an obligation to help the Histiocytosis community.
I then started The HLH Advocates pages on Instagram and Facebook to create illustrative graphics as a checkpoint for people to stop and read about HLH. I do this in my free time and I am in the process of creating free digital illustrations for the warriors and their families. People are always sharing illustrations through social media, especially when there is a message or a piece of information worthy of sharing. I wanted to create graphics for the community to be able to share for their own awareness campaigns. Not only that, but what makes me know that my page is doing something right is when people message me to let me know how they recently found about HLH and how my illustrations helped them get more information.
Mostly everyone who is diagnosed with HLH has never heard about it, and that is why me creating The HLH Advocates was important because it is a stop for people to read about it and further ask how they can help and get help. I hope that with my academic, professional, and creative backgrounds that I can encourage people outside of the community to ask questions. I know it might not be the biggest, best, or right way to do so, but as long as people become aware of histiocytosis and decide to help, then that is what is important. The community, like any other rare disease community, is worthy of help from everyone, but it takes effort from everyone to make a difference.
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 Brenna
I was first faced with Histiocytosis in April of 2021 when my dad was diagnosed with HLH. He had been to countless doctors’ visits and done numerous tests before they were able to figure out what had been causing him pain for many months previously. My dad had always been my biggest supporter growing up so when he was sick it was always a priority for myself and my family to be there to support my dad. Histiocytosis is a rollercoaster. Growing up 5 minutes from Hershey Park I’m very familiar with all the fast paced up and downs, twists and turns, and unexpected drops. histo diseases are unpredictable and everyone’s experience with it is so different but so similar at the same time. You have to fasten your harness and prepare for all of the ups and downs, but make sure you laugh and take those crazy pictures!
My dad was in and out of the hospital from April 2021 to September 2021. It was so scary hearing everything that was going on and feeling like I didn’t have anyone outside of my family that I could talk and relate to. I didn’t want to worry my family with how much I was worrying. I had never heard of HLH before my dad was diagnosed. There was never any fundraiser or event or support group in my area. While my dad was sick, he always talked about how he wanted to do everything he could to raise awareness and organize fundraisers for Histiocytosis awareness. I’m looking forward to pursuing that for him and bringing awareness to Histiocytosis in my area and providing any and as much support as I can to others, on their journey with Histiocytosis.
Meet Kevin
Hello, my name is Kevin. I am the Community Outreach Coordinator for a special ed organization as well as a father to my beautiful daughter Sophia and a husband to my wife Dr. Leah M. I am proud to say I am a Histio Warrior.
For me it all began in the summer when I turned 11 years old. I was a very active child and playing Little League baseball competitively. I can remember it to the pain and the exact moment I was rounding the bases and felt a pain shoot down both my legs and I could hardly move screaming in pain. The pain kept radiating down both my legs and lower back as days went on and I knew something was wrong. The next stages were by far the scariest because being 33 years old now I was in the “unknown” world of histio diseases at the time. That summer I spent in excruciating pain with little answers from doctors. During a PET, Bone and MRI scan it was seen that I had a “tumor” the size of my fist on my lower spine. This was scary because the first thought even at 11 is cancer. To say I wasn’t scared is a lie. Being so young and unaware of what was going on and spending countless days doing testing and in hospitals I was scared for the worst. The dialogue started to shift from terminal cancer to a rarer unknown disease called LCH on a doctor visit to U-Penn chops. LCH? All I could remember at the time was it was an unknown disease and not a terminal cancer. I consider myself one of the lucky ones because I avoided all treatments and just took 6 months off from sports and the “clot” disappeared on its own.
Going through all that was hard at a young age, and I was very appreciative of my parents and my brother being with me every step of the way. As I grew out of LCH I always found the disease to be “super-human” might be easier for me to say because here I am talking about it 20 years later, but I always had a minor sense of enjoyment for my rare disease. It was when I became more mature and older where I started to do my own research on different things like, “Is it genetic? How did I get it? and Do I have to look for disease in the future?.” As I became more interested, I came across the Histiocytosis Association where I met with Deanna and Jeffrey, and I felt a huge sense of relief. I wasn’t the only person I knew who had this disorder anymore. I was finally connecting with people who not only understood what I went through but experienced it themselves. I shared that anyway possible I would love to help and give back any way I can. Support is so important for such a rare group of people, and I am happy I found it and now have become an ambassador for the Histiocytosis Association.
I pride myself on being a long time histio warrior and am proud of all I have accomplished being dealt with such a major life hiatus and challenge. All the tests and unknowns created health anxiety and fear that was not fun, however, here I am now at 33 years old a healthy young man with a beautiful and healthy family ready to share my compassion, our associations' resources and give my time to help anyone in need. If there is one thing I don’t take for granted anymore that’s the blessing I have to live each day to its fullest. I am proud to be an ambassador and Histio warrior.