I am...
I am...
The Ambassador Program
Our Ambassador Program offers two meaningful pathways for volunteer leadership—one for adults (18+) and one designed specifically for youth ages 12–17 in partnership with a parent or guardian. Histio Ambassadors are patients, survivors, caregivers, and family members who bring lived experience and a shared commitment to raising awareness, supporting research, advocating for policy, and educating others about histiocytic disorders.
Adult Ambassadors serve in a one-year renewable term, participating in meetings, hosting events, contributing to community initiatives, and leading passion-driven projects that create real impact. Our Youth Ambassador Program empowers young people to find their voice alongside a parent or guardian, building confidence and leadership skills while engaging in advocacy, education, and outreach efforts.
Together, both programs foster connection, amplify diverse perspectives, and help move us closer to a world free of histiocytic disorders.
Ready to get involved? Choose your path:
Adult Ambassador Program (18+)
Lead with your experience. Advocate, educate, and make an impact in the histio community.
Apply HERE to the Adult Ambassador Program
Youth Ambassador Program (Ages 12–17 with Parent/Guardian)
Lead, learn, and make a difference with a parent or guardian.
Apply HERE to the Youth Ambassador Program
Because it only takes one person to make a difference and bring us one step closer to a world free of histiocytic disorders.
Questions?
If you have any questions, please reach out to Outreach Program Coordinator, Melinda Atnip, at matnip@histio.org.
Current Ambassador Team
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 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 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 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 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 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 16 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 baby 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. This 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 because explaining histio 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 because of what Hudson has been through. With the help of my amazing mom, Allie (who now works for the Histiocytosis Association), 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 started her first fundraiser a month after he was diagnosed, I jumped in to help. I’ve not only helped my mom with her fundraisers, but have done three of my own as well and have helped to raise over $10,000 in the fight against histio since Hudson’s diagnosis in 2019.
When my mom told me about the new histio youth ambassador program I knew that that was another way of helping in the histio community. Having a loved one have something as rare and unknowledgeable as histio is very hard and can be scary and isolating sometimes. I want to use my experience being a histio sibling to not only educate people, but also help other histio families so they know they aren’t alone.
I don’t have histio but I struggle with my own autoimmune disorders and know how frustrating being sick can be. Having a histio diagnosis is stressful because it is so rare and can be hard to treat. Having gone through my own struggles on top of witnessing all that Hudson’s been through, has led me to want to pursue a career in nursing. Helping other kids with histio is my passion and I hope to one day become a pediatric nurse at Texas Children’s hospital, working with histio patients on the oncology/hematology floor.
Besides my involvement being a youth ambassador, I also play select and high school softball. It is my safe place and my space to escape the struggles of being a medical family. Playing softball helps to keep me healthy through my own struggles, but it also helps keep my mind off of stressing as much when Hudson is going through more tests or procedures. I know that having a healthy balance is important and having a positive outlet can help so much. I want people to know that no matter what is going on in life, make sure you still have fun and focus on the positive things in your life.
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!