I am...
I am...
The Ambassador Program
Histio Ambassadors are patients, survivors, caregivers, and family members who have often been involved with the Association before joining the Ambassador team and are committed to raising awareness, supporting research, advocating policy, and providing education for those affected by histiocytosis. Representing all histiocytic disorders (e.g., LCH, ECD, RDD, JXG, HLH, Histiocytic Sarcoma), they bring personal experience and passion to their volunteer roles.
Ambassadors commit to a renewable one-year contract, attend four meetings annually, host an awareness or support event, and join educational sessions. They offer community feedback, support others, and lead awareness and fundraising efforts. Each ambassador has a unique passion project tailored to their strengths and goals, creating meaningful impact and connection within the histio community.
They also work on collective projects, like expanding the physician directory and educating medical students, fostering improved care and understanding.
Interested in joining? Check the ambassador profile description below to see if this role is a good fit. If you have any questions, reach out to us before applying. Remember, it only takes one person to make a difference and bring us one step closer to a world free of histiocytic disorders.
Melinda Atnip,
Outreach Program Coordinator, Histiocytosis Association
matnip@histio.org
Current Ambassador Team
Meet Allie
Hello, my name is Allie and I am the mother of a Histio warrior. My three-year-old son, Hudson was diagnosed with Rosai Dorman disease in 2019 at eight months old after undergoing surgery for an enlarged lymph in his groin that was dangerously close to impacting his femoral artery.
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 Anna Grace
My first encounter with histiocytosis was at age 17, when I first presented with HLH. Lead up to HLH, it became clear that my immune system is overactive, leading to the development of a severe allergy disorder and digestive failure. Spring 2020, diagnosis of HLH was delayed 5 days as doctors attempted to understand my new presentation of fevers and DIC. They eventually checked my ferritin level to rule out HLH, which resulted at 40,900. I later met 8/8 diagnostic criteria for HLH, and genetic testing revealed that my HLH is in fact genetic: a digenic presentation with heterozygous PRF1/STXBP2 variants, one inherited from each parent.
My journey has been difficult. Now at 22, since my first flare at 17, I have had 3 other episodes of HLH. One of those episodes involved inflammation of my brain, while another involves inflammation of my liver. I’ve undergone multiple treatments, some of which resulted in complications. My entire family has had to uproot their lives to relocate in order for me to receive the right medical care, and presently all of my energy is devoted to managing my condition.
I first sought out the Histiocytosis Association in 2022 after feeling isolated by how rare my diagnosis is. Through this organization, I’ve found others who have gone through similar experiences. I have also had many opportunities to help give back the same support I wish I had received when I was new to HLH. Though my diagnosis has been difficult, I wish to show others that there really is hope for histiocytosis!
Meet Brinda
Hi! My name is Brinda, and I was diagnosed with RDD at 13. My symptoms first started as weight loss, increased fatigue, and a visible lump on my parotid gland (a gland that sits in front of the ears). I first saw an ENT doctor who thought my symptoms could be due to a viral infection and I was prescribed antibiotics. The antibiotics were not working, and my symptoms were worsening, so a CT scan was ordered. The scan showed multiple enlarged lymph nodes in my neck and lymphoma was suspected. It was frightening to hear this as an 8th grader who just wanted to enjoy her last year of middle school and move on to high school. I first had a needle biopsy that came back inconclusive, so the concern of cancer was pushed aside. After bouncing around many different types of doctors and having different types of procedures done, scans continued to show lymph node involvement. I was referred to oncology in January 2017 and I was diagnosed with Histio in February 2017 after a surgical biopsy on a newly palpable neck lymph node. Shortly after diagnosis, I had a PET and bone scan to determine the extent of the growth. The growth was localized to my lymph nodes, and I started a steroid treatment. Probably my most frightening experience while on my treatment was having a seizure as I was tapering off steroids. My pediatric oncologist became concerned about brain involvement which fortunately was not the case after several scans. Navigating through Histio along with the typical teenager life was definitely a turbulent time with uncertainties given the rarity of Histio. Luckily, I was able to have teen years that were still memorable, despite everything going on, thanks to my parents and best friends who were all so extremely supportive and uplifting.
After a follow-up PET in 2018, the lymph node growth had mostly disappeared, but a very small mass was shown elsewhere so my oncologist sent us to Texas Children's for a second opinion regarding whether to do steroids again or start chemo. Luckily, the oncologist there felt a wait-and-watch protocol would be best. I had to continue monitoring and visiting my oncologist for blood work throughout the years. In 2022, I had my last pediatric oncologist appointment and was in transition to see an adult oncologist yearly. In December of 2022, I had my first PET scan since 2018, and it was my first scan that showed NED! To this day, I still deal with chronic fatigue, but I am so grateful to be in good health!
I will graduate in May 2025 with my Bachelor of Science degree. Currently, I am interviewing at medical schools to potentially start in Summer 2025. My goal as a future physician is to become a hematologist-oncologist with a focus on histiocytic disorders.
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 loved ones in my corner rooting for me helped ease 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 Dena
Hi, my name is Dena, and I am a Histio Warrior. I was born and raised in Southern California. I have a beautiful 18-year-old daughter (Avery), a rescue German Shepherd (Maya), and a cute kitty cat (Ren). I’ve worked in the Healthcare Field for nearly 25 years and enjoy helping others. I am a huge LA Dodgers fan and find comfort in cooking, baking, Yoga, and tending to my many plants.
I was diagnosed with Langerhans Cell Histiocytosis in 2019. My LCH involves the brain, lungs, and skin. I also have Diabetes Insipidus (DI). My symptoms began in 2017 with red tiny bumps on my scalp and a bikini wax gone bad. I spent the next year and a half going to endless doctor visits and enduring painful procedures. When I was finally diagnosed I was sent to City of Hope and started on Oral Chemotherapy treatment. I was scared of the unknown. I had little knowledge of LCH, and my Oncologist didn’t know much at the time either. I prayed for a community that understood all the emotions I was feeling and going through. In 2021 I unexpectedly met someone who was facing a similar journey and she lived not that far from me. We began messaging each other and she introduced me to this whole world of Histio. In September of 2022, I attended her event in San Diego CA. It was a life-changing moment for me filled with so many emotions. I finally felt seen and heard. I was surrounded by others who were going through similar journeys. It was an eye-opening weekend filled with the one thing I desperately needed, HOPE!
My Histio journey has been long, full of uncertainty, and filled with much pain, physical changes, and many different emotions. Every day is a different battle filled with unknown challenges. I remain on Oral Chemotherapy treatment and suffer from all the horrible side effects it causes, but I now have found an amazing Oncologist who is caring, shows empathy, is willing to work with me, and wants to help.
My life was forever changed in January 2019. My Histio journey continues, but now I know I am not alone and I have resources and other Warriors that surround me, encouraging me to continue to fight this endless battle.
Meet Diana
Diana is a 19-year-old musical theatre major at the university of Memphis, a local titleholder in the Miss Tennessee (America) Scholarship competition organization, an arts education advocate, and a Histio Ambassador! At just 15 months old, Diana was diagnosed with Langerhans Cell Histiocytosis. Something that, at the time, she and none of her family even knew existed. But thanks to the wonderful doctors at Vanderbilt children’s hospital, Diana was given the best treatment at the time and is now 17 ½ years LCH free.
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 is an Associate at Pathstone Modern Family Office in Potomac, MD. Additionally, he is a Histio Ambassador at the Histiocytosis Association and currently lives in Washington, DC.
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 Hank
My story begins in late 2018. I spent a few months in Germany with my son and daughter-in-law as they fulfilled a military obligation. During my free time, I enjoyed cycling, but I started experiencing abdominal pains that never went away. Upon returning home, I immediately made an appointment with my family physician, who then referred me to a specialist at a local medical facility. They conducted several biopsies and initially concluded that I had stage four colon cancer.
Fortunately, the physician sent the biopsy to Harvard University for a second opinion. Harvard determined it was not colon cancer and, though uncertain, suggested the possibility of Erdheim-Chester Disease. Further testing was required, and I was referred to the Illinois Cancer Clinic. My case sparked additional interest from my family physician, who planned to refer me to the Mayo Clinic if the Illinois Cancer Clinic couldn't provide a diagnosis. Luckily, my physician at the Illinois Cancer Clinic did refer me to the Mayo Clinic.
During this time—from the initial misdiagnosis on a Friday to my referral to Mayo Clinic the following Friday—I spent several days in deep reflection and prayer. I leaned on my faith, resolving to keep moving forward and trusting it to guide my path. A week after my initial diagnosis, I received a call from Mayo Clinic, where my physician would be Dr. Keith Bible. God does answer prayers! In March 2019, I was finally and correctly diagnosed with Histiocytic Sarcoma.
After surgery and seven subsequent treatments, I felt a calling to give back and reach out to others facing cancer, as well as to their caregivers, at both Mayo Clinic and the Illinois Cancer Care Infusion Center. Additionally, through a Facebook search, my daughter Heather connected me with four other people with the same rare cancer. I immediately began a daily reflection and meditation text and email campaign, reaching out to patients and caregivers regardless of their specific cancer type. Today, I connect with several hundred patients and caregivers daily and have spoken at several celebration of life ceremonies. This experience has given me a profound purpose in life, and I consider this cancer a blessing.
The doctors at Mayo Clinic are incredible, continuously encouraging, supporting, and checking in on me. They may not ultimately be able to save me, but I place my hope and trust in the Mayo Research team to find a cure. I have made it known that I am willing to participate in any trial, regardless of side effects, to aid this mission. I am committed to raising awareness, reaching out to others daily, and keeping my phone on 24/7 to support, encourage, and pray for others. It’s about serving others, and it has taken me 65 years to find this purpose. I will not let my Savior down.
Meet Heidi
I began my medical career in the US Navy as a Hospital Corpsman. I then received my BSN at the University of Vermont and enjoyed an extensive career as a traveling nurse in pediatric and adult dialysis.
Memphis became my permanent home when I began the next stage of my career at St Jude Children’s Research Hospital in 2002.
In 2016 I became part of the Global Pediatric Medicine Department under the leadership of Dr. Carlos Rodriguez Galindo. He had helped to found the North American Consortium for Histiocytosis (NACHO) and I became their first full-time employee. I was so excited to help build this wonderful and important consortium in the histiocytosis community!
NACHO has grown to have over 65 institutions in the consortium, with experts in Histiocytosis from all over the country and is still growing. It is an honor to work with these physicians from around the world trying to find a cure for these rare diseases.
The NACHO Operations team
I retired from St Jude this year, but I wanted to continue to be part of the Histiocytosis community. I had participated in several Histiocytosis Association activities in partnerships with NACHO and knew what a wonderful organization it is!
I knew this would be the perfect next step for me, and I applied to be a Histio Ambassador.
I am SO excited to join this amazing organization with the goal of helping to provide information and knowledge to the histiocyte community. I hope to help link the patients and their families to the appropriate medical staff and institutions who can help guide them to successfully treating their disease. The Histiocytosis Association has so many resources, and I will work on making sure that the patients who need these will have the availability and knowledge of how to access them. Histiocytosis is a rare disease, and I am ready to do my part in spreading awareness of the disease and treatments available to all who need it!
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 Mark
I'm Mark, a devoted dad to two incredible teenage boys, Ben and Max, and loving husband to Robin.
Our histiocytosis journey began unexpectedly when Ben, our eldest, started experiencing neurological symptoms at 12. After a 16-month diagnostic journey, he was diagnosed with Primary CNS Isolated HLH in October 2020. In February 2021, Ben underwent a challenging bone marrow transplant, and today, three years post-transplant, he's thriving.
Experiencing firsthand the emotional rollercoaster of a histiocytosis diagnosis, we found invaluable support from the Histiocytosis Association. Inspired by our journey, I became an ambassador, organizing an annual golf outing to raise awareness and fund research for HLH. Our aim is to offer hope and support to families facing similar challenges.
Through sharing our story, we hope to inspire others facing histiocytosis. Partnering with the Histiocytosis Association, we strive to make a real difference, providing compassionate community support to those in need.
Meet Megan
Hello, my name is Megan and I am SO proud to call myself an international Histio Ambassador! I was born and raised in England, UK and currently live in Oxfordshire.
My Histio journey began when I was 16 years old, a young girl who had just started college (A-levels). I started to feel unwell 2 months into my studies where I predominantly had a fever and horrendous flu symptoms. After multiple trips to the GP, I was diagnosed with Glandular Fever, a viral infection that can be detected by a blood test. The infection is very common amongst young adults but unfortunately there is less than 1 in a million chance the virus can trigger an Autoimmune disease - Secondary Haemophagocytic Lympho-Histiocytosis (HLH). It was my abnormally high ferritin levels that initially gave me the ‘red flag’. , I had a CT and MRI scan, a lumbar puncture and a bone marrow biopsy to confirm the disease. From there, I was put onto the 2004 protocol, which mainly consisted of chemotherapy and steroids, along with some antivirals/antibiotics to clear my glandular fever.
It was a very intense few months but luckily my body responded well and I started to wean off the protocol after undergoing 8 weeks of treatment.
My drive to become a Histio Ambassador comes from the loneliness and isolation I have felt for the past decade, being told the disease is so RARE and that I was UNLUCKY and UNFORTUNATE - it created a very dark space in my mind - I felt as though my body had betrayed me! My mental health has suffered particularly in the last few years. It took 10 years for me to talk openly with my parents about what happened as it was such a gut-wrenching subject - BUT talking about it and having these tough conversations started to set me free.
I want to raise awareness and help support the Histio Association so that the “1 in million” Histio warriors do not feel alone, have an early diagnosis and a successful battle against their disease.
My HLH did not define me but it certainly helped me find my passion - I am currently a scientist working in clinical trials for Cancer Therapeutics.
Outside of work, I love to travel, especially to Italy, spending time with my family, and this year, I'm getting married! BUT most of all - my rabbits, Winston and Duchess have my heart ❤️
Meet Melinda
I began my role as a Histio Ambassador and Outreach Program Coordinator in January 2022, at a time when it felt especially significant. During the COVID-19 pandemic, my husband Barry started experiencing symptoms that led to a life-altering diagnosis. In May 2020, his journey began with eye irritation and severe abdominal bloating. Nine challenging months later, on January 19, 2021, we discovered that my husband of 30 years and the father of our two sons was battling Erdheim-Chester Disease (ECD), a rare blood cancer and histiocytic disorder.
The path to Barry’s diagnosis was grueling. It required an overwhelming number of blood tests, kidney and bone marrow biopsies, and the search for the right specialist. We faced a storm of emotions: fear, frustration, anxiety, and hopelessness. The doctors told us the disease had likely been growing undetected for a decade, initially affecting his pituitary, long bones, and eye orbits. Histiocytes had multiplied, leading to severe abdominal fibrosis and encasing his kidneys.
During those nine months, the COVID-19 pandemic added an unimaginable layer of complexity to our lives. The world was anything but normal. In ordinary times, couples would hold hands for comfort during medical procedures, but our reality was different. Barry and I could only text each other while he underwent procedures—I sat outside the hospital while he was in the basement, among the few patients allowed inside. At home, Zoom doctor appointments became routine; we participated in over 50 virtual meetings, often searching medical terms online to understand his condition. Words like “Tumor Board” and “Biopsy Block” became part of our vocabulary, and we saw the concerned looks of doctors trying to make sense of Barry’s complex case. Even medical interns would gather in the hallways, intrigued by this rare and challenging presentation of ECD.
After nine months, our lives were irrevocably changed. We left our old world behind and began managing a rare disease. We became members of the “ZEBRA club,” a special community where terms like genomic sequencing, targeted therapy, clinical trials, BRAF-E600v, and the nuances of CT, MRI, and PET scans were familiar. Groups like the Histiocytosis Association understood us and offered a network of support that made us feel less alone.
To those facing a histiocytic disease: there is hope. Although Barry’s disease is chronic, he can still hike, ski, mountain bike, and travel. He is on targeted therapy for his genetic mutation, supported by a team of ten hero doctors. He manages the disease by taking ten pills a day and two shots a month, allowing him to lead an active life.
My mission is to SPREAD HOPE and help others feel less isolated in their histiocytic disease journey. My family is dedicated to the mission of the Histiocytosis Association, transforming feelings of fear, frustration, anxiety, and hopelessness into courage, trust, strength, and hope.
Meet Michelle M.
Michelle is an ambassador who has been a part of the histio community since 2013 when her son Ty was diagnosed with JXG. She has been organizing Ty-Fighters 5K, a Star Wars themed race, to raise funds for histio research for the past 5 years.
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
Hello, my name is Nate Milam II and I am currently in school pursuing a Health Services Management degree to one day fulfill my dream of becoming a Patient Advocate, and be a voice for those who have not found theirs yet. I deeply value music, courage, and the interpersonal relationships I choose to have in my life. My journey has been anything but easy, however, those unfortunate experiences have shaped me into the person I am today. I was misdiagnosed with Crohn's disease at the age of 7, and continued to live and be treated for that diagnosis until I was 19. It was then when I was introduced to my accurate diagnosis of Hemophagocytic Lymphohistiocytosis (HLH), which was caused by a genetic mutation called X-linked Inhibitor of Apoptosis (XIAP) syndrome at birth.
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
I'm Robin, a devoted mom to two incredible teenage boys, Ben and Max, and loving wife to Mark. Alongside my family roles, I'm a passionate educator and histio ambassador.
Our histiocytosis journey began unexpectedly when Ben, our eldest, started experiencing
neurological symptoms at 12. After a 16-month diagnostic journey, he was diagnosed with Primary CNS Isolated HLH in October 2020. In February 2021, Ben underwent a challenging bone marrow transplant, and today, three years post-transplant, he's thriving.
Experiencing firsthand the emotional rollercoaster of a histiocytosis diagnosis, we found invaluable support from the Histiocytosis Association. Inspired by our journey, I became an ambassador, organizing an annual golf outing to raise awareness and fund research for HLH. Our aim is to offer hope and support to families facing similar challenges.
Through sharing our story, we hope to inspire others facing histiocytosis.
Partnering with the Histiocytosis Association, we strive to make a real difference, providing compassionate community support to those in need.
Meet Sarah Grace
Sarah Grace's journey is one of remarkable resilience and determination, underscored by her passion for music and her unwavering spirit in the face of adversity. As she nears the completion of her Bachelor of Arts in Music with a focus on Vocal Performance and a minor in General Business at Grand Valley State University, her story serves as a testament to the power
of pursuing one's dreams despite the challenges that life may present.
At just fifteen years old, Sarah Grace was confronted with the daunting diagnosis of HLH, later finding out it was triggered by a rare genetic mutation: XIAP-2 deficiency. Her journey to understanding and managing her condition has been fraught with uncertainty and setbacks, yet through it all, with significant help and advocacy from her mother, she has remained steadfast in her pursuit of both academic and personal fulfillment.
The journey to a definitive diagnosis was not easy, but Sarah Grace's resilience shone through as she and her mother sought answers and advocated. Her experience at the National Institute of Health in 2022 marked a significant turning point, providing validation for her symptoms and offering invaluable support and guidance in navigating her condition.
Despite the challenges she faces, Sarah Grace's outlook remains one of hope and optimism. Her involvement with the Histiocytosis Association has been a source of solace and inspiration, reminding her that she is not alone in her journey and that collective efforts towards awareness, research, and support can pave the way for breakthroughs in treatment and, ultimately, a cure.
As she looks towards the future, Sarah Grace is driven by her passion for music and her desire to make a difference in the lives of others. Whether through pursuing a graduate program in Music Therapy or Contemporary Vocal Pedagogy, she is committed to leveraging her talents and experiences to uplift and empower those around her.
Meet Shannon
The symptoms started with increase in thirst in the early 2000’s. I was getting up at night and fatigued during the day. I had a work up done, a water deprivation test, that was negative. My symptoms were unexplainable and eventually went away.
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
My name is Stephanie, and I am a Histio warrior. 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 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.
Before becoming a Histio Ambassador, I began my journey as an advocate for research back in high school, when I performed on NPR’s From The Top and received support to organize a benefit concert at my local church with my friends and colleagues from Chicago Youth Symphony. Years later when I joinedMiami 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 had a close relationship for the past few years and it inspired me to continue my efforts to combine my job and my desire to connect with people in the medical community.
Stephanie, now, with her viola
My first year as an ambassador, I organized a Blue Ribbon Run in my hometown through our local triathlon club. This year, I am working to organize a fundraising event here in Sarasota, Florida, where I am now Principal Viola of the Sarasota Orchestra. I have a new musical and personal community with whom I am able to share my story and spread awareness.
In the past, I have felt largely powerless to contribute to medical advancements as a musician but realized that I do have the power to help others heal. I look forward to opportunities to connect with local hospitals so that I can play for and be a compassionate presence to patients.
Meet Suzanne
Hello, my name is Suzanne. I was diagnosed with Langerhans cell histiocytosis in 2016 at the age of 72. I first heard those words from a nurse practitioner who called to give me the results of a pathology report on a biopsy that she had down during a physical 2 weeks before. She had been determined to find the cause of skin lesions that had persisted for three or four years and had not responded to treatment for bacterial or fungal infections. She said than I had better write this done because it was rare and that she had had to look it up. She told me that I would need to have some further diagnostic tests to determine whether there were any other areas of my body affected. I am proof that, although LCH is more commonly a pediatric disease, it can strike at any age.
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
I am a mother of four amazing kids, my husband Joe and I own a Full-Service Fishing Lodge outside of Missoula, MT. When I am not spending time outdoors with my family, I practice Reiki and other modalities of energy healing. I am passionate about being a Histio Ambassador.
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!
Youth Ambassadors
Interested in becoming a Histio Youth Ambassador?
Are you between the ages of 12 and 17 and passionate about making a difference for patients and families affected by histiocytosis? Through the Histio Youth Ambassador Program, youth partner up with a parent/guardian to team up against histiocytosis.
If you are interested in applying, click HERE. If you’re unsure about applying but want to learn more about the program, feel free to email our Outreach Program Coordinator, Melinda Atnip, at matnip@histio.org for more information.
Meet Avalon
Hello! My name is Avalon, I am 14 years old. My histio story began when I was 10 years old. My little brother, Hudson, was diagnosed with RDD (Rosai Dorfman Disease) at 8 months old. A week or so after his first surgery my parents broke the news to us (myself and older brother, Patrick) that Hudson had a rare disease. I was very scared and anxious. I was also very upset because I felt like there wasn’t a thing in this world that I could do to help my little brother.
In May of 2022 my family and I flew to NYC for a benefit dinner for the Histiocytosis Association, where I was asked to speak about how histio has changed my life. Having been asked to explain how histio had changed me and my life was a question I sat on for a long time. Talking about histio has always been easy for me, but for some reason I couldn’t find the proper way to explain how it had changed me. Explaining histio to people is difficult sometimes. In my case it’s hard to talk about my personal experience with histio rather than just talking about histio as a whole. With the help of my amazing mom, Allie (who is also a Histio ambassador), I wrote an incredible speech that touched the hearts of many people.
From the moment I was told Hudson had been diagnosed with histio I knew I wanted to help in any way possible so when my mom told me about the new histio youth ambassador program I knew that that was my way of helping in the histio community. Having a loved one have something as rare and unknowledgeable as histio is very hard. I want to educate people and help them so that they know they aren’t alone. And that they can still make a difference.
Exactly a year ago I started playing softball. Softball has become a place for me to escape. If something had been going on with Hudson, I could go play softball to keep my mind off what has happened around me but still have fun so it’s important for people to know that no matter what is going on in life, make sure you still have fun.
I am 14 now and am about to start my freshman year of high school. I am very excited to be a part of the Histiocytosis Association and to be able to raise awareness in my own fundraisers. I hope to help people go through histio even if histio doesn’t directly affect their body, but rather someone they love. I am ready to find a cure.
Meet Brady
Hello, I'm Brady!
At the age of 4, my journey with Langerhans cell histiocytosis (LCH) began. Though I don't recall the specifics of my diagnosis, my parents recount how I transitioned from a lively toddler to becoming withdrawn and struggling with severe leg pain. An orthopedic examination revealed a lesion in my femur, swiftly leading to surgery and a confirmed diagnosis of LCH.
Throughout my life, I've encountered several other lesions in my bones, prompting ongoing collaboration with my medical team to navigate the most effective treatment path.
Now 17, I've come to appreciate the rarity of this condition, igniting a passion within me to look deeper and offer support to others. This interest aligns with my aspirations for a career in healthcare, prompting my involvement in the Histio Community as a Youth Ambassador.
Despite its challenges, LCH has instilled in me a sense of purpose and a commitment to take charge of my health journey.
Beyond my medical journey, I enjoy playing baseball, spending time with friends watching movies, camping and online gaming.
Meet Nate
Hello, my name is Nate, and I am thrilled to be a Histiocytosis Youth Ambassador! I’m a 14-year-old living in Washington DC, and my Histio journey began at the age of 3, when I was diagnosed with Langerhans Cell Histiocytosis (LCH). I initially had surgery to remove a tumor on my hip and was later diagnosed with another tumor on my pituitary that same year. I barely recall the diagnosis and treatment journey, but I do know that it included many weeks at Children’s National Medical Center in DC. My surgeries were immediately followed by a year-long course
of chemotherapy. Fortunately, other than having to navigate diabetes insipidus, thanks to the impact of LCH on my pituitary, there has been no evidence of LCH since I ended treatment, which is amazing.
Although LCH has had a big impact on my life, I have lived much of my life knowing very little about this rare disease, and I have rarely considered that there were many other kids like me.
With the Histiocytosis Association, I am excited to have an opportunity to connect with others like me and share my story. I was introduced to the Association by my parents who have also been impacted by LCH because of my experience, and we are excited for the opportunity to get
involved in the action to shine a spotlight on this disease. I hope that I will be able to make a positive change while also learning more in the process.
In addition to being an eighth-grade student, I love skiing, crew, hanging out with friends, and traveling with my family.
I am looking forward to making a difference in the world of rare diseases, including fundraising, advocacy, and spreading awareness. I am incredibly proud to be a Histio Youth Ambassador and I can't wait to see what we can accomplish!
Meet Tyler
Hi! My name is Tyler, and I was diagnosed with Langerhans Cell Histiocytosis shortly before my first birthday. Symptoms began with my right eye swelling shut, and doctors speculated that allergies or infections were causing it. I was put on IV antibiotics, which reduced most of the swelling; however, a few days later, my eye swelled shut again. Back at the hospital, an MRI revealed a hole in the orbital bone above my right eye, along with a mass in the same area. Doctors performed a biopsy of the mass and used curettage, and lab results showed I had LCH. Then, after confirmation of the disease by a second doctor, I was put on chemotherapy for six months. Luckily after only two chemo sessions, my eye was almost entirely back to normal. For the next decade, I went to Lucile Packard Children's Hospital Stanford for annual MRIs and blood tests. I have had no evidence of disease since chemo, which is the best possible outcome because there is no specific cure for LCH. It is very unlikely to come back, but not impossible.
Today, I am a 17-year-old senior in high school, and for most of my life, I ignored my LCH story because I had never met anyone like me. However, the Histiocytosis Association changed my perspective of it from an adverse, frightening event into something with positive effects by making me realize the importance of support and a sense of community. For instance, my mom mentioned the Association while telling me my story, and I stumbled across the ambassador program. For the first time, I became aware of people who went through similar experiences with LCH or other histiocytic disorders. I finally found people who have stories like mine.
Becoming an ambassador was the perfect opportunity to learn more about myself, meet people affected by Histiocytosis, and help others feel less alone. Even though I just began my role as a Youth Ambassador when writing this, I have already met with California’s Senators to advocate for the rare disease community. Whether it’s spreading awareness, fundraising, or lobbying Congress again, I can’t wait to do more. Although there is no great thing about LCH and Histiocytosis, being connected to this amazing community has changed my outlook on life. I am so proud to be a Histio Warrior and the first Histio Youth Ambassador.
Below is an interactive map with the spread of our ambassadors across the country!