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The Ambassador Program
The Histiocytosis Association Team is proud to have launched the Histio Ambassador Volunteer program in 2022.
The Histio Ambassador program has been in the making for several years and in 2022 became a goal to help further the mission of the Association. After several months of collaboration, and interviews with the histio community, the program opened up applications in March of 2022.
To become an ambassador one must have first-hand experience navigating a histiocytic disorder diagnosis and passionately want to help. The volunteer ambassador position is a one-year commitment and volunteers must be willing to attend two meetings a year, host one awareness/support gathering a year, and also attend two educational opportunities or education sessions hosted by the Histiocytosis Association.
So far, the ambassadors have been integral in community and disease related feedback. Some have moderated virtual support groups while others have distributed care bags to newly diagnosed patients, run bake sales, participated in and developed awareness campaigns and fundraisers.
The ambassadors are a unique and special group of individuals. Most of them have already been involved in the association. They are comprised of patients, caregivers, and caregivers of histio angels representing all of the histiocytic disorders (Adult and Pediatric LCH, ECD, RDD, JXG, and HLH)
You can read about each ambassador below and you will see where their passion comes from. They are dedicated to raising awareness about histiocytic disorders, provide educational and emotional support, and funding research leading to better treatments and a cure. Their stories tell us about their journey and why they want to further the mission of the Histiocytosis Association.
Want to join the team? Please see the ambassador profile description below to see if this is a good fit for you. If anything, reach out to us to discuss the possibilities before applying. After all it only takes one person to make a difference and one step closer to our vision to one day see a world free of histiocytic disorders.
Melinda Atnip,
Outreach Program Coordinator, Histiocytosis Association
matnip@histio.org
2022-2023 Ambassadors
Meet Alena
The dermatologist immediately recognized the spot as a Juvenile Xanthogranuloma, a kind of non-Langerhans cell Histiocytosis that is usually confined to the skin, but in 4-10% of cases can cause tumors throughout the body. The CT scan the following week revealed that LJ had many JXG tumors throughout his lungs. Though this news was devastating it was a relief to finally have an answer for LJ’s mysterious symptoms.
LJ was quickly seen by a histiocytosis expert who ordered full body scans to look for further disease. These scans showed that the JXG tumors in his lungs had doubled in size in two weeks and that LJ also had a JXG tumor in his brain and in his spine, threatening the nerves of his spinal cord and legs. A biopsy showed that LJ’s JXG also had aggressive mutations, often associated with other kinds of cancer. LJ started chemotherapy soon after when he was only three months old. 
LJ had a total of three years of IV and oral chemotherapy, ending 10 days before his third birthday. During that time, he endured countless scans, surgeries, hospital stays, clinic visits, needle pokes, and side effects of chemotherapy. LJ is now six years old and in first grade. As he runs with his friends and learns how to read, we are so grateful that his histiocytosis was diagnosed and treated relatively quickly, as JXG brain tumors can often cause serious permanent side effects.
When LJ was first diagnosed there were only three documented cases of his kind of systemic JXG, now there are many more reported throughout the literature and doctors continue to learn more about diagnosing and treating these rare Histiocytic disorders. LJ continues to be a trailblazer in all areas, doing things on his own terms, with a love of candy, creatures, and chaos.
Meet Allie
That initial phone call from Hudson’s general surgeon informing me of his rare disease diagnosis will forever be etched into my soul. Just hearing the words “rare disease” is enough to debilitate and send you plummeting into emotional turmoil; I instantly felt shock, loneliness, fear, and helplessness. On top of that, Hudson’s surgeon had never heard of Histiocytosis before and that alone sent a wave of fear through me. It was at that moment that I knew our lives would never be the same. I vowed that I would do everything in my power to ensure Hudson received the best possible care.
Hudson’s first appointment with his oncologist was our second dose of disappointing news; his oncologist had never heard of or treated RDD before. Aside from her inexperience, her nonchalance regarding our concerns illuminated the uphill battle ahead of us. Becoming Hudson’s strongest advocate was second nature to me, and I was able to find and contact a specialist from Texas Children’s (TCH) for a second opinion. From there we were able to establish a line of communication spanning from Texas to Washington. The oncologist from TCH helped ensure that Hudson had the testing he believed was necessary to determine the RDD progression in Hudson’s groin about which I was concerned. My motherly instincts were correct, and Hudson did, in fact, need another surgery to remove more painful lymph nodes in his groin when he was just 13 months old. Having now lost faith in our child’s oncology office, my husband and I made the difficult decision to relocate our children from the only home they had ever known, to Texas so Hudson could be seen by oncologists that specialize in Histiocytosis.
With my own experience fighting beside my little Histio Warrior, thrust into a world of unknowns, I felt compelled to do more. Each year since Hudson’s diagnosis, I have organized or participated in fundraisers to help raise awareness and money for research for Histiocytosis. In addition to this, I try to reach out to offer my support to families of newly diagnosed histio warriors, so they know they are not alone.
Before I became a stay-at-home mom and had a child with a rare disease, I was a 911 operator and always felt like my calling in life was to help others during the toughest times of their lives. Since Hudson’s diagnosis, my devotion to helping others has shifted from it being my career path, to it becoming my personal mission of helping others within the histio community. I am looking forward to working as an ambassador for the Histiocytosis Association and seeing what we can continue to accomplish for our current and future histio warriors and the battles they will face.
Meet Ana
Ana with her 4-year-old son
I am 35 years old, a single mom of a silly and handsome 4-year-old boy, and a histio warrior. My symptoms started in the last trimester of my pregnancy. I was thirsty, dehydrated all day, and lost over 30 pounds. After many months, many embarrassing accidents, quite a few tests later, and being wrongfully diagnosed with other illnesses, I was finally diagnosed with diabetes insipidus (DI). Although I was being treated for DI, I was still getting scans and being referred to many specialists to find the cause of the DI and symptoms (headaches, dizziness, fatigue, bone pain, & limping). My journey continued with my pituitary being radiated, having several biopsies, and traveling to other states to see Histiocytosis specialists. I was at my wit’s end after discovering they never should have radiated my pituitary, and several tests that needed to be ordered to properly diagnose weren’t ordered. I needed answers, a formal diagnosis.
Fortunately, my insurance changed, and I was referred to a histio specialist, who not only lived in the same state, but ordered the correct scans and proper testing. It took nearly 3 years to get formally diagnosed.
I have Langerhans cell histiocytosis with pituitary and bone involvement. The LCH in my pituitary caused hypothyroidism and adrenal gland insufficiency.
This journey has been long, full of uncertainty, pain, emotional and physical changes. I’ve had to face this process while learning how to be a single parent.
I’ve learned how to reframe the narrative for myself vs focusing on how hard this is. I’ve learned to draw from faith that God gives me strength, energy and power to face each moment, and learned how to connect with family. I want to share with you that Histiocytosis has shaken the foundation of who I was, my priorities, things that defined me. I learned that treatment is not just chemo but what you are giving to yourself to heal yourself. What am I telling myself? How am I narrating my life despite histio. I’ve learned to also redefine hope. Hope in this moment, in this single breath. Hope in focusing on what I do have right this second. Having tenacity for this moment! Hope in being present with myself, my son, and a growing desire to deposit hope to my fellow histio community.
I was delighted when I first discovered the ambassador program with the Histiocytosis Association, as I have a passion to connect with others and help the histio community. Having a rare disorder can be a lonely and emotional journey. My hope is to unite the community, raise awareness, and raise funds for research and families in financial hardship. I want to use my personal journey and the skills I’ve gained throughout these five years to help, empower, and uplift our histio warriors.
Meet Andrea
Hello, my name is Andrea, and I am a mother of a two-year-old Histio warrior. My daughter, Victoria was initially diagnosed with multifocal bone Langerhans Cell Histiocytosis (LCH) in February 2021, at the age of 9 months old. At the time of diagnosis, we had never heard of LCH and were scared of the unknown and journey. Upon review the literature and talking with our doctors, the plan was to undergo chemotherapy and steroid treatment for a year to “knock-out” the LCH. Little did we know that our journey would take us past a year, with relapse at 10 months (when we were in maintenance phase) and then additional disease progression into additional bones and digestive tract 4 months after the relapse.
Victoria’s journey with LCH has not been straightforward and we have had a lot of ups and downs, but we are confident that we will get to no active disease. Over the course of her journey her team has expanded to include the hospital’s oncology department, gastrointestinal (GI) doctor, and specialist from Texas Children’s Hospital. Together her team has been working hard to treat the LCH and to navigate side effects. To date, she has logged over 100 days in the hospital and received over 60 chemotherapy infusions (with three different chemotherapies).
Because of my science background, I have always felt a need to understand the ins and outs of whatever I face. With my daughter’s diagnosis, I naturally gravitated to the literature and sought out resources, including the Histiocytosis Association in order to learn more about why LCH occurs, who is impacted, what are the protocols for treating various systems (e.g. bones, GI, skin). In my search for knowledge, I learned that LCH is still not well understood and often cast aside as a "non-cancer" despite being labeled as a histiocytic neoplasm by the National Comprehensive Cancer Network and blood cancer by the World Health Organization.
Although I have yet to meet another Histio warrior at my daughter’s hospital, I have been blessed to meet other mothers with cancer warriors and have gained an understanding of the common threads - worry, anxiety, fear, relapse, side effects, long hospital stays. Without their compassion, I would have felt isolated throughout this process. As an ambassador, it is my goal to help provide understanding to the community and be a voice and/or support to others going on about to start their journey. Additionally, I hope to help guide both our medical community as well as other histio warrior families on the types of resources available, including the many resources listed on the association's webpage. Whether through blood drives, various events, or casual discussion it is important that others are aware of Histiocytosis and indicators of disease.
Meet Brenna
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 Brinda
My journey helped me realize my passions and the career that I want to pursue for the rest of my life. If I could give one piece of advice to someone newly diagnosed, I would say to never be afraid to ask for help from family/friends. My journey with Histio often felt like a lonesome and uncertain time but having my best friends in my corner rooting for me eased my tensions. Always remember that you are not alone in your journey and that you have a whole network of people here at the Histiocytosis Association who support you and are rooting for you!
Meet Carol
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 Diana
While her memories of her diagnosis and treatment remain vague, Diana has heard a large number of stories from her family, and she wants to share those stories and experiences with the world to inspire some hope for those who are or those who have loved ones who are fighting Histiocytosis. Diana has also made a push for Histiocytosis awareness. She runs an Instagram account known as “hopeafterhistiocytosis” where she posts photos of blue things under the hashtag “#hahbluefinds”.
Her hope is that more people participate in her trend on their own accounts, while not only hash-tagging “#hahbluefinds” but other Histiocytosis awareness hashtags to help other advocates spread their message.
Diana is incredibly honored to be a part of the Histio Ambassador Team and hopes to connect with those in the histio community. Her motto in life is “live with passion and positivity” and that is a motto she will continue to honor as a Histio Ambassador. She is ready to do her part in spreading hope and spreading awareness across the world!
Meet Drew
Drew was diagnosed with Langerhans cell histiocytosis (LCH) shortly after being born. For four years, he and his family would live in and out of the hospital which they often called "going camping". After multiple surgical removal procedures and chemotherapy, he was cured and has not had any signs of the disease since. Drew then went on to become a member of the Wake Forest University Men's Division 1 baseball team before graduating in 2018. "The Histiocytosis Association provided my family and I with support, information and resources to help us beat the horrible disease. I have devoted myself to give back to the histio community the same way that it supported me and my family during those confusing and uneasy times".
Meet Jeff
Jeff with his daughter Bethany
Jeffrey Toughill, has been a backbone to the Histio Community since 1986; spearheading a global organization that supports histiocytosis patients and families by providing a safe space, listening ear, education, community, and help in finding the right medical team. Jeff is a community treasure who embodies the mission of the Histiocytosis Association: embracing a vision of a world free of histiocytic disorders.
The Toughills were determined to establish an ongoing support network, so that no other patient or family facing histiocytosis would ever have to feel as alone as they had upon receiving Bethany’s diagnosis. In August of 1986, the Toughills published their first newsletter addressing the issues faced by patients and families affected by histiocytic disorders, and they mailed it to their newly created network. By October of 1986, the Histiocytosis Association was incorporated as a nonprofit agency by the State of New Jersey, and in May of 1988, acquired 501(c)(3) status.
Together as a community, we’ve taken the idea of two determined parents, Jeff and Sally Toughill, who began their work at a small kitchen table in Pitman, New Jersey and have grown it into a globally recognized nonprofit organization that has been truly making a difference for over 35 years. Their daughter, Bethany, was diagnosed with LCH as a baby but is now a thriving adult with a family of her own. Just like Bethany’s story, there is an incredible future still ahead - one full of promise and hope for a cure!
Jeff and Sally Toughill were interviewed about their family's fight against histio by Family Circle Magazine in 1987, not long after establishing the Histiocytosis Association. Read the full article and view photos from where the roots of the Association began and Jeff’s contribution to the Histiocytosis Community.
Jeff is considered to be the original histio ambassador. He started the association and is now retired. He continues to counsel others, answers social media support questions to patients, and also attends ambassador and team meetings. THANK YOU JEFF FOR MAKING A DIFFERENCE IN SO MANY PEOPLE’S LIVES!
Meet Joe (Histio Angel)
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 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.
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 Mark
Mark met his wife of 28 years in Detroit. They have two handsome, kind, red-headed boys; Ben 15, and Max 14, and a happy-go-lucky golden-doodle named Bailey. Mark enjoys golfing, fishing with his sons, traveling, hanging out with friends and family, cooking, and singing opera and mariachi music.
Mark & Robin came across the Histio.org website shortly after their son Ben was diagnosed with CNS isolated HLH. The association helped put their minds at ease with its available resources and information.
Mark’s hope for histio is to contribute to the mission set forth by the association to raise awareness and help raise money to fund the research needed to diagnose patients quicker so they have the best possible outcomes.
Meet Melinda
My job as a Histio Ambassador and the Outreach Program Coordinator came to me at the right time in my life. While the world was battling the COVID-19 pandemic, my husband —Barry was diagnosed with a rare disease on January 19, 2021.In May of 2020, my husband's journey began with some eye irritation and a severely bloated abdomen. Little did we know that, nine months later, my husband of 30 years and the father of my two sons was suffering from Erdheim-Chester Disease (ECD), a rare blood cancer and histiocytic disorder.
We went through an arduous diagnostic odyssey that led to Barry’s ECD diagnosis. The process involved the doctors collecting an insurmountable amount of blood samples, conducting kidney and bone marrow biopsies, and finding the right specialist. This journey involved struggling with emotions of fear, frustration, anxiety, and hopelessness. The doctors told us that the disease had probably been growing inside him for ten years undetected. It presented itself first on his pituitary, long bones, and eye orbits. The histiocytes divided and multiplied, leading to severe fibrosis inside his entire abdominal cavity and encasing his kidneys.
During the nine months, our lives took a turn that I never ever imagined. The world was not normal. Usually, when a couple visits a hospital for a medical procedure, they hold hands to comfort each other when the spouse is about to go in. However, our situation was different; instead of holding hands, we would text each other the entire time he was undergoing the procedure. I was on the outside of the building while he was in the basement of the hospital with the other few patients allowed to go downstairs. Back at home, zoom doctor appointments became a norm, and we had over 50 meetings. We had to search medical jargon on Google to understand the condition. Words such as “Tumor Board” and “Biopsy Block” became common. We could notice his doctor’s baffled look as she tried to make sense of the medical results and deliver the bad news. Even interns streamed in the hall to see the most complicated Erdheim-Chester case.
After nine months, we became different people; we left our old lives behind and started managing a rare disease. We joined the ZEBRA club; a special and rare group of people that understand terms such as genomic sequencing, targeted therapy, clinical trials, histiocytic disorders, BRAF-E600v, and the difference between a CT/MRI/PET scan and CBC blood draw vs. a Lipid Panel. These rare disease communities became part of us; they understood and made us feel less alone. 
I want to assure any patient or family facing histiocytic disease that there is hope. My husband can hike, ski, do mountain bike riding, and travel. He is now on targeted therapy for his genetic mutation. He has a team of 10 hero doctors that take care of him. He manages the disease by taking ten pills a day and two shots a month, making him live an active life.
My job is to SPREAD HOPE to others and to make people feel less alone with their histiocytic disease diagnosis. My family is dedicated to the mission of the Histiocytosis Association as we want to spread hope to others and make them feel less alone in their histiocytic disease diagnosis. To take away the feelings of FEAR, FRUSTRATION, ANXIETY and HOPELESSNESS and uplift them to have COURAGE, TRUST, STRENGTH and HOPE.
Meet Michelle M.
At eight months,Ty was fascinated by wheels; he would stare down at the wheels on a stroller instead of enjoying the scenery during walks. Ty also had a large tumor growing on his lung. The mass grew to be so big that he couldn’t breathe on his own and it blocked a major artery.
Michelle and her husband Sean were told after the mass biopsy that the tissue looked like juvenile xanthogranuloma (JXG), but that JXG only appears on the skin, not on internal organs, so they didn't know what he had. For two weeks Ty needed to be kept sedated and on a breathing machine. Imagine not being able to hold your baby for two weeks.
Ty was diagnosed with systemic JXG, something only 32 people in the US are currently diagnosed with. As of this post Ty has been chemo-free for 7 years and in remission or “stable with no active disease” for 8 years.
Meet Michelle P.
With a multifaceted background in education, nursing, massage, nutrition and fitness Michelle brings a unique blend of talents to the Histio Ambassador Program. Her passion for assisting others through their personal journey has led her to pursue her degree in integrative health at Arizona State University where she is currently a senior planning to obtain her Doctorate level degree, Michelle enjoys time on her mini farm where she lives with several of her rescue animals. 
Her vision is to bring education to the medical community so histio will be more known and able to be treated. She desires to be a comfort for those families and individuals who are or have struggled with the disease. She is working on creating a community space for those who are in need of healing, education and a safe space to belong as well as a home retreat to serve others who are healing from loss or trauma through nature, massage and animal therapy.
Michelle came to the ambassador program after the loss of the love of her life, Fire Captain David A. Phay. Fulfilling the role of ambassador is part of a promise she made to David to not let his death be in vain. She looks forward to this new and challenging role in her life with honor, respect and a passion to eradicate Histio.
Meet Nate
I was misdiagnosed with Crohn's on 3 separate occasions for a variety of reasons, but mainly due to the fact that XIAP syndrome is so rare, most Gastroenterologist (GI) doctors are not aware of its existence. In my case, the "de novo" (spontaneously arising for the first time) XIAP mutation resulted in partial loss of function of the gene, which caused a problem in the immune system that led to uncontrolled inflammation in response to an infectious trigger. HLH is a dangerous blood disorder that impacts white blood cells in the body that are usually tasked with fighting infections and other diseases. In the case of someone with HLH, those cells kick into overdrive and target vital organs instead of remaining localized to the problem area. In February 2018, I found myself sicker than ever because those cells were targeting my liver and other organs causing me to become septic and leaving me in the intensive care unit (ICU) for months. An incredible physician in the ICU recognized my symptoms were more severe than a typical Crohn's patient, and decided to look deeper for a clear explanation of such symptoms. After the genetic testing came back positive for HLH, I was quickly placed in the care of the bone marrow transplant (BMT) team and my rigorous course of treatment commenced. Finding a stem cell transplant donor and treating sepsis were the first of multiple priorities. Afterwards, I went through several exhausting rounds of chemotherapy to kill the bad cells in my body and get prepared for the fresh new cells. On January 5, 2019, I had a bone marrow transplant that saved my life.
Meet Robin
Robin has a Master’s in Literacy and has been teaching for 20 years. Before teaching, she worked as a medical assistant to an orthopedic surgeon for 14 years.
Robin’s 15 year-old son was diagnosed with Primary CNS Isolated HLH in October 2020, 16 months after initial symptoms began. In February 2021, he underwent a bone marrow transplant and is now considered to be in remission. This experience turned their world upside down. They were scared and felt alone. No one they knew had heard of HLH, no one could share their experience with Robin and Mark. Once their son was healthy again, Robin and Mark decided they needed to work on a few things: raising awareness of HLH in and out of the medical community, raise money for research to aid in diagnosing HLH quicker, become regular blood donors, encourage others to donate, and lastly to encourage others to sign up to become bone marrow and organ donors. 
Robin’s hope for histio is to raise awareness of HLH so patients are diagnosed and treated in a more timely manner. She also hopes to connect with other families going through HLH by having an empathetic ear and to help them understand they are not alone on this journey.
Meet Shannon
In 2011, I had a CT scan for an abdominal issue. I read the report and there was something questionable with my kidney, “clinical correlation”. It was not thought of because I wasn’t having any problems but my gallbladder was abnormal and needed to be removed. That was the focus.
In 2015, I started having body aches and one evening after work I started having chills with a feeling of something exploding in my body causing achiness all over. It eventually subsided. I went to see my PCP and all blood work was normal. I requested to see a rheumatologist, which I saw for over a year with no definitive diagnosis. It was after that I started having bladder infections which I never have ever had! A small amount of blood that cleared was revealed on urinalysis. I was told I was fine and I did not feel I was. I self-referred myself to a urologist. The urologist actually listened to me and ordered a series of tests which revealed something in my kidneys. I will never forget the phone call-“I don’t want to scare you but something is going on with your kidneys. I want you to see an oncologist.” An oncologist, I thought? What in the world is going on? I then saw the oncologist and had more testing and no one knew what they were seeing. In fact, the interventional radiologist was not confident in obtaining the bioposy due to the location in my kidneys. I referred myself, again, to Mayo Clinic, and that, after over 3 weeks and 3 pathologists (one being the head of Genetics) reviewed my pathology and confirmed the diagnosis of Erdheim Chester Disease.
ECD is in the family of histiocytosis. It has changed my life but not all for the bad. Yes, you grieve because you are not the person you once were. I am not able to work in a profession that I loved for over 26 years, not able to travel like we once did, and am at home most of the time due to the fatigue and symptoms I experience. What has it brought me? A much needed new circle of friends, a small e-commerce business that I can work at my own pace, a new perspective on life, and most of all a biological father, “bonus” mom, and siblings that I never knew I had. I could not be more grateful and appreciative of each and every day. I have to look to the positive in life no matter how bad things can get and that is what I do. I focus on what I can do, not what I can’t do. I have found out who cares and who is supportive and surround yourself by them. I never give up and fight for answers. Most of all, as my mother used to always say you “keep the faith”. Being resilient, staying active, listening and learning are my goals as a Histio Ambassador, and I hope I can help others fight this rare disease.
Meet Stephanie
Stephanie at 3 months old
When I was 3 months old, I was diagnosed with Langerhans Cell Histiocytosis. It had taken several months to find a diagnosis, and when that finally happened, it was critical to my survival that doctors acted fast. My parents fought tirelessly to get me the best care they could and encountered plenty of obstacles along the way. When I was first diagnosed, some doctors and nurses believed I would only make it past a month or two.
I was treated with chemotherapy for about 12 months, and thankfully took to it well. Today, I am healthy and able to live the life my parents envisioned for me. I have extra gratitude for the things my body allows me to do, and for the fight that I had in me as an infant.
Stephanie, now, with her viola
When I was contacted about possibly being a Histio Ambassador, it felt like the perfect next step in my lifelong journey to raise funds and awareness. The past few years as a violist in Miami Beach’s New World Symphony, I played an active role in the medical community, visiting patients whenever I could and presenting concerts to raise money for the Histiocytosis Association. We have had a relationship for the past few years, but I was just beginning to think about how I’d love to be more closely involved. I was so excited when the opportunity to do this work came up. While talking to some amazing association members, I found that I could play more of an important role than I originally thought.
I have felt largely powerless to contribute to medical advancements as a musician, but I realized that I do have the power to help others heal. My reason for doing any of this is that I want to be the person to make someone’s day a bit brighter. I’ll go to great lengths to do so and contribute the best way I know how to find a cure.
As a musician, I hope to attend conferences, put on a benefit concert, and visit patients in hospitals. I am moving back to Chicago and want to connect with other members of the Histio community as well as possibly reconnect with the doctor at Children’s Hospital who saved my life!
I’ve never put together a running race, but that is also something I’d love to do, and I would get to follow my other passion besides music. I’m so excited for all of the possibilities that lie ahead as an ambassador, and I am so thankful for the support of the association.
Meet Suzanne
In my search to find more information about this disease, I quickly came upon the Histiocytosis Association website. Within 2 days I received a phone call from Jeff Toughill, the founder and then director of the organization. His information was helpful, informative, and reassuring. He sent a link to an article describing care for adults with LCH and said that he wanted me to print that out and to give it to every provider that I might visit.
I quickly became aware that finding a doctors with any knowledge or experience with histiocytic disorders would be a challenge. I found a radiological oncologist who had dealt with pediatric patients at a teaching hospital about 2 hours away. He ordered tests recommended, but no one at that institution had ever treated an adult with the disease. I finally self-referred to a large cancer center in Boston, a 400-mile drive away. I have been very happy with the care there and when I was diagnosed there with a rare leukemia, I was referred to another specialist there.
Because of my experiences and difficulties in finding knowledgeable providers and even a diagnosis, I try to talk about the disorders with any medical providers I see. It is so rare that it tends not to come across anyone’s radar and thus, can take years to be diagnosed as did mine. Raising awareness, helping others to find valid information about the disorders, and supporting and encouraging research have become very important to me. I am a patient advocate for a study now underway by Dr Gaurav Goyal at the University of Alabama, Birmingham to study the long-term health implications of adults who have ever had a histiocytic disorder. Studies such as this need to be done to help patients and providers developing plans for health care.
Meet Tammi
My son was diagnosed with Langerhan's Cell Histiocytosis (LCH) in October of 2018 at 10 years old. There were no doctors in Montana able to treat him so we traveled to Seattle Children's to see an amazing Pediatric Oncologist Dr. Navin Pinto. We were blessed that there is a fantastic group of doctors and nurses in Missoula who work in conjunction with Seattle Children's which allowed him to have his chemo treatments in Missoula and our family of 6 to stay together. He went through a regimen of weekly vinblastine infusions and high dose steroids for 6 weeks, followed by a vinblastine infusion and high dose steroids for 5 days every 3 weeks for the following 12 months, traveling to Seattle every 3 months for his MRI's, skeletal surveys and follow up appointments with his Oncologist. He was declared in remission in November of 2019! He continued to have follow up appointments every 3 months for one year and then every six months after that. In June of 2021 my son developed symptoms of Diabetes Insipidus and after an MRI and PET Scan in July we were told his LCH had reactivated in his pituitary causing the DI. In August we were back in Seattle for a second port placement and his first round of twelve 5-day infusions of cytarabine. He did not tolerate the cytarabine well at all and missed 50 days of school in fall of 2021. After 5 rounds and a very low ANC he had an MRI that showed no further lesions and we decided to stop treatment. There is minimal research on how a reactivation of LCH should be treated so in conjunction with his oncologist we decided my son's quality of day-to-day life was most important. He will continue to have follow up MRI’s every 6 months and he takes medicine daily for DI.
Raising awareness about Histio disorders and funds for research is one of my life goals. I am hopeful the Histio community will one day find a cure!
Meet Teresita
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.
Below is an interactive map with the spread of our ambassadors across the country!