Happy Awareness Month!
Uncovering Histio. Amplifying Voices.
Welcome to Histio Uncovered — a powerful awareness event by Stripes of Solidarity. Together, we’re shining a light on the rare, complex world of histiocytic disorders and the resilient communities they touch.
This is a movement! Through authentic conversations, expert insights, and lived experiences, we’re bringing together trailblazers, advocates, and changemakers to reveal the realities too often left unseen.
Scroll down to meet the incredible speakers who are helping us uncover stories, break barriers, and ignite change for the histio community and beyond.
Providers–Histio Experts
Dr. Diamond is a leading neuro-oncologist at Memorial Sloan Kettering Cancer Center (MSK), where he specializes in caring for patients with Erdheim-Chester disease (ECD), other forms of histiocytosis, brain tumors, and neurologic complications of cancer. After completing his neurology residency at Massachusetts General Hospital and Brigham and Women’s Hospital, Dr. Diamond trained in neuro-oncology at MSK, where he now serves as a dedicated clinician, researcher, and collaborator.
At MSK, Dr. Diamond leads and contributes to numerous groundbreaking studies aimed at improving understanding, diagnosis, and treatment of ECD and related conditions. His work includes pivotal clinical trials such as the Vemurafenib and Cobimetinib studies, as well as research focused on tumor genetics, biopsy techniques, and the impact of ECD on the brain.
Beyond his clinical and research leadership, Dr. Diamond is co-founder of the global ECD Patient Registry, supported by the ECD Global Alliance, and co-leads the ECD Care Center Referral Network, helping connect patients with specialized care worldwide.
Through his work, he continues to shape the landscape of histiocytosis research and provide compassionate, innovative care to patients and families navigating these rare diseases.
Dr. Goyal is a hematologist-oncologist with a special interest in histiocytic disorders. He completed medical school at Smt. N.H.L. Municipal Medical College in Ahmedabad, India, in 2011, and then moved to the United States for further training. He completed his internal medicine residency at Creighton University Medical Center in Omaha, Nebraska, in 2016, followed by a fellowship in hematology and oncology at the Mayo Clinic in Rochester, Minnesota, in 2019.
During his fellowship, Dr. Goyal developed a deep interest in histiocytosis and went on to establish the first multidisciplinary Histiocytosis Working Group, dedicated to improving the understanding and care of patients with these rare diseases. This group was later expanded to form the Histio-Care Network, with multi-institution collaborations to advance the practice, education, and research for patients and families affected by histiocytic disorders. His research spans a wide range of topics including the epidemiology, molecular biology, clinical presentation, treatment, and long-term outcomes of histiocytic disorders. He has led the guidelines for the management of Erdheim-Chester disease (ECD) and Adult Langerhans cell Histiocytosis (LCH).
After joining the University of Alabama at Birmingham (UAB) in 2019, Dr. Goyal expanded his focus to include cancer survivorship and long-term outcomes. In 2022, he launched the Histiocytic Disorder Follow-Up Study to better understand the long-term health effects in people living with histiocytosis.
Dr. Goyal’s work has been supported by multiple organizations, including the Histiocytosis Association, AIDS Malignancy Consortium, Leukemia & Lymphoma Society, and the American Cancer Society. He leads national and international collaborations and clinical trials, and holds several leadership roles, including serving as chair of the Hemophagocytic Lymphohistiocytosis (HLH) in Adults and Adult LCH Working Groups under the Histiocyte Society.
Dr. McClain received his M.D. and Ph. D. from the University of Chicago, completed pediatric residency at the Johns Hopkins Hospital, and post-doctoral research training in the Laboratory of Molecular Genetics, Child Health Institute, and National Institutes of Health. He has dedicated his clinical and research efforts on the histiocytic diseases for over 46 years beginning with his hematology/oncology fellowship at the University of Minnesota. Since 1986 he has been at the Texas Children’s Cancer Center in Houston where he is a Professor of Pediatrics. In 2001 he organized a Histiocytosis Center there and was joined by Dr. Carl Allen in 2006. Together they have developed a robust clinical program which has attracted many patients from around the world.
Due to the large number of specimens collected from patients enrolled on research studies they have developed successful translational research studies with collaborators from several other institutions. Langerhans cell Histiocytosis (LCH) patients with neurologic dysfunction have been a special research interest of his leading to innovative therapies and new biologic understanding of this problem. Dr. McClain has cared for adult patients with histiocytic diseases for nearly 30 years. He is a past president of the Histiocyte Society and been a member of the education and scientific committees as well as worked with the Adult Hemophagocytic Lymphohistiocytosis (HLH), LCH, and Rare Disease committees.
Dr. Rocco is a physician-scientist and clinical investigator at the National Institute of Allergy and Infectious Diseases (NIAID) and Chief of the Hemophagocytic Lymphohistiocytosis (HLH) and Hyperinflammatory Syndromes Section within the Laboratory of Immunoregulation and Infectious Disease. After completing fellowship at NIAID, he was awarded a position through the National Institutes of Health (NIH) Transitional Program in Clinical Research, which provides up to 5-years of funding, where he started a clinical-translational research program dedicated to studying the immunopathogenesis of HLH in adults. He is the Principal Investigator of the HERCULES clinical trial (Hemophagocytic Lymphohistiocytosis Evaluation and Research of Clinical, immUnoLogic and transcriptome Study) – a prospective, longitudinal study of adults with HLH that allows for the systematic collection of research samples while providing clinical care for participants.
Thus far, they have treated and collected longitudinal research samples on over 100-individuals. His research laboratory has a focus on multi-Omics utilizing proteomics, high-dimensional flow cytometry, paired T-cell receptor and single-cell RNA sequencing, and whole genome sequencing to further characterize these complex hyperinflammatory patients. Overall, their goal is to provide an unprecedented, in-depth immunopathogenic evaluation of a well-annotated, prospective HLH cohort to better characterize the spectrum of disease and to identify targetable immune pathways that can be treated with personalized therapies.
Dr Oussama Abla is a Professor of Pediatrics at the University of Toronto and a pediatric oncologist at the Hospital for Sick Children in Toronto, Canada. He is the Founder and Director of the Pediatric Histiocytosis Program, Director of the Histiocytosis Fellowship Program, Chair of the International Histiocytosis Clinical Rounds, and a member of the Leukemia/Lymphoma section at the Hospital for Sick Children.
His clinical and research interests focus on better understanding of the biology and treatment of of Rare Histiocytic Disorders (RHD), pediatric Langerhans cell Histiocytosis (LCH), acute promyelocytic leukemia (APL) and rare childhood non-Hodgkin’s Lymphomas. He is the Co-Editor of the “Supportive Care in Pediatric Oncology”, “Histiocytic Disorders”, “Non-Hodgkin’s Lymphoma in Childhood and Adolescence” and “Acute Promyelocytic Leukemia: A Clinical Guide” textbooks, the Principal Investigator of the International Rare Histiocytic Disorders Registry (IRHDR) and the Canadian National coordinator of the LCH-IV Trial.
He is one of the founding members of the North American Histiocytosis Consortium (NACHO), Chair of the NACHO-Rare Histiocytosis Working Group, as well as a member of the NACHO-CNS-LCH and LCH working groups. Dr. Abla has given several international presentations and co-authored more than 150 publications and book chapters focused on pediatric histiocytoses and leukemia/lymphoma, as well as supportive care in pediatric oncology.
Patients/Survivors–Histio Warriors
Barry is a husband of 33 years, the proud father of two sons, and a grateful father-in-law to a wonderful daughter-in-law.
His rare disease journey began in 2018 with excessive thirst and urination, leading to a diagnosis of Arginine Vasopressin Deficiency (AVP-D), a rare and little-known condition that was his first sign of histiocytosis. In 2020, new symptoms escalated into a nine-month diagnostic odyssey. On January 19, 2021, Barry was diagnosed with Erdheim-Chester Disease (ECD), a rare blood cancer caused by the BRAFV-600E genetic mutation.
Barry manages his disease with targeted therapy, taking 10 pills daily, two injections each month, and receiving care from a team of 10 physicians. Twice a year, he flies across the country to Memorial Sloan Kettering to see two specialists, ensuring he receives the most advanced care. Despite the demands of treatment, Barry lives an active life—working, spending time with family, and embracing each day with gratitude.
He enjoys hiking, skiing, weight training, and organizing his garage, and regularly shops at Home Depot, Walmart, and Costco. Professionally, he serves as CFO of his family’s snack company, started by his father, and generously donates snacks for histiocytosis events. Barry also believes in funding research to improve treatments for others.
His journey has inspired his wife, Melinda, who serves as a Histio Ambassador and Outreach Program Coordinator for the Histiocytosis Association, spreading hope and connection to patients and families navigating histiocytic disorders. From AVP-D to ECD, Barry’s story embodies courage, resilience, and hope, inspiring both his family and the rare disease community.
Deanna Fournier is an LCH survivor, former Executive Director of the Histiocytosis Association (2020-2025), and advocate for health, wellness, patient-centered care, and the advancement of integrative medicine approaches to whole person health. Born and raised in and around New York City, she now resides in Arkansas with her husband and two dogs.
Anna Grace came to be familiar with the challenges of illness through her own genetic disease, causing multiple rare complications, most notably of which are autoimmune autonomic ganglionopathy (AAG) resulting in intestinal failure and immune dysregulation resulting in mast cell dysfunction and hemophagocytic lymphohistiocytosis (HLH).
Now at age 23, she has dealt with the challenges of illness for 13 years. Although she has been significantly impacted by illness, it has also inspired her to help improve the way medical providers diagnose and treat illnesses, and she is passionate about supporting other people impacted by rare disease. Most recently, she has served as a patient ambassador to the Histiocytosis Association, representing those affected by HLH and other histiocytic diseases.
Sydney Martin Rutstein is a Donor Workup Specialist at the National Marrow Donor Program ( NMDP) (formerly Be The Match), a certified child life specialist (CCLS), and the founder of the Giving Rocks Foundation.
A survivor of Langerhans Cell Histiocytosis (LCH) and dedicated patient advocate, Sydney brings both personal and professional expertise to the forefront of rare disease and pediatric cancer awareness. She serves on the Board of Trustees for the Histiocytosis Association, where she champions research, advocacy, and community support for Histio patients and families.
Allie is the mother of a Histio warrior. Her six-year-old, Hudson was diagnosed with Rosai Dorman Disease (RDD) 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 his family that he had a rare disease diagnosis was one of the worst calls of their life. On top of that, Hudson’s surgeon had never heard of Histiocytosis before. It was at that moment they knew their lives would never be the same. Allie vowed to do everything in her power to ensure Hudson received the best possible care.
Hudson’s first appointment with his oncologist was the second dose of disappointing news; his oncologist had never heard of or treated RDD before. Aside from her inexperience, her nonchalant behavior regarding concerns worried Allie. Becoming Hudson’s strongest advocate was second nature to her and she started researching specialists on RDD. Allie found and contacted a specialist from Texas Children’s (TCH) for a second opinion and was 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, which Allie was concerned about. Motherly instincts proved 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 their son’s oncology office, Allie and her partner made the difficult decision to relocate their children from the only home they had ever known, to Texas, so Hudson could be seen by oncologists that specialize in Histiocytosis.
Allie’s experience fighting beside her histio warrior led her to feel compelled to do more. Each year since Hudson’s diagnosis, she has organized and/or participated in fundraisers to help raise awareness and money for research for Histiocytosis. In addition, she became an ambassador for the Histiocytosis Association and is now the Fundraising Events Coordinator, turning her passion into purpose. Her son’s diagnosis changed her path in life and she is now a fierce advocate and supporter for the histio community.
Michelle first learned of Histiocytosis after her only son Ty, then 9 months old, was misdiagnosed with pneumonia. Ty was treated for pneumonia for a week and a half and he didn’t get better, so they dug deeper. A large tumor was found on his lung. For a month they lived at the hospital while doctors tried to diagnose Ty. He went through multiple surgeries and procedures, including a blood transfusion, heart surgery, chest surgery, and biopsies of his bone marrow, his spine, and the mass. They 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.
On November 29, 2013, the day after Ty’s first Thanksgiving, the doctors said that they had waited as long as they possibly could and they had to treat Ty with something even though they risked making him worse. Later that day, Ty was diagnosed with mediastinal JXG. Yes, the same thing we were originally told didn’t grow on internal organs. Ty began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. Ty continued chemo for a year. So far, the JXG remains stable, but on the day Ty was diagnosed, Michelle vowed never to stop raising awareness and research funds for histiocytic disorders.
Today, Ty is a fun and very funny 12 year old who loves rock climbing, playing video games, and creating Roblox games. He is in 7th grade and Michelle can’t wait to see what he does next!