Beyond the Diagnosis

Welcome to Episode 091 of the Beyond the Diagnosis Podcast. Artificial intelligence is opening new possibilities in rare disease research, but what happens when we combine that technology with clinical experience, research, and a willingness to think differently? In this episode, Kathy talks with Dr. Luke Chen, a hematologist and Professor of Medicine at Dalhousie University and an advisor to Every Cure, about the power of drug repurposing and what it could mean for patients with Rosai-Dorfman disease and other rare diseases. Dr. Chen explains how Every Cure uses machine learning to identify promising connections between existing medications and diseases, and how that work, combined with clinical experience, helped elevate lenalidomide and dexamethasone as a treatment option for RDD. They also discuss what it means for this combination to become a preferred treatment in the NCCN Guidelines, particularly for patients who may have limited access to other therapies. Most importantly, this conversation offers a hopeful reminder that progress in rare disease can come from looking at the tools we already have in new ways—and that there is still tremendous potential to uncover.   Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Dr. Fajgenbaum’s Book: Chasing My Cure: A Doctor’s Race to Turn Hope Into Action Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith  

Welcome to Episode 093 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with Kristen Nesensohn, Chief Program and Development Officer at the Histiocytosis Association, to talk about her journey, her many roles, and the impact of her work on the histio community. Kristen shares how she first found her way to the organization, what it means to support patients, families, fundraising, and outreach, and why she feels so connected to the people she serves. They also discuss the importance of community events, regional education meetings, and the role of donors in making programs possible. It’s a heartfelt conversation about hope, connection, and the progress being made behind the scenes. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith  

Welcome to Episode 092 of the Beyond the Diagnosis podcast! In this episode we’re exploring the often-overlooked mental health impact of rare disease across every stage of the journey, from the uncertainty before diagnosis to treatment, remission, and beyond. Licensed social worker Doris Dahdouh joins us to discuss the emotional realities patients, caregivers, and siblings face, including anxiety, grief, guilt and isolation, while offering practical ways to cope through clear communication, intentional support, daily routines, gratitude, and peer connection. The conversation is compassionate, validating, and deeply practical, reminding listeners that feeling overwhelmed is normal and that no one has to navigate rare disease alone. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Learn more about our Peer Support Groups at www.histio.org/resource-overview/peer-connection Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 091 of the Beyond the Diagnosis Podcast. In this episode of Beyond the Diagnosis, Kathy sits down with hematologist Dr. Richard Godby from Mayo Clinic to explore the rapidly evolving role of artificial intelligence in rare disease and healthcare. Together, they unpack how AI is already helping patients and physicians navigate complex medical information, shorten diagnostic journeys, improve advocacy, and potentially accelerate research and treatment development. Dr. Godby also shares practical guidance on how patients and caregivers can begin using AI thoughtfully and responsibly while understanding its limitations, risks, and ethical considerations. Whether you’re curious, skeptical, or already experimenting with AI yourself, this conversation offers a fascinating and hopeful look at how technology may reshape the future of rare disease care. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Watch Dr. Godby's presentation on AI for wAIHA Warriors hereFollow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith  

Welcome to Episode 090 of the Beyond the Diagnosis Podcast. In this heartfelt episode, Kristin Aaron shares the inspiring story of her son Jenson, whose joyful spirit sparked the Monkey Grins initiative, bringing smiles to children battling histiocytosis and their siblings. Despite the challenges of Langerhans cell histiocytosis (LCH), Jenson's legacy of love and resilience continues to uplift families worldwide. Discover how advocacy, community support, and simple acts of kindness can transform grief into a powerful force for good. Join us for a conversation that proves even the smallest gestures can make a world of difference. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Request a Monkey Grin Interested in donating to the Monkey Grins program?  You can do so here. Register for our Two-Part Webinar Series  A chance to learn, reflect, and feel supported-join us for one or both sessions. This two-part webinar series focuses on supporting your well-being while navigating care. Attend one or both sessions for practical insights and connections.   Register here for May 5th:  Emotional Balance in a World of Chronic Medical Stress  Register here for May 13th: Tools to Thrive: Everyday Habits for Healing and Whole-Body Wellness  Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith

Welcome to Episode 089 of the Beyond the Diagnosis Podcast. In this episode we sit down with 2024 Histio Student Scholarship recipient Brinda Shukla to hear her powerful journey from a Rosai-Dorfman Disease diagnosis at age 13 to pursuing a future in medicine. Brinda shares her personal story, what it was like to apply for and receive the scholarship, and how the experience has supported her academic and professional goals. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Histiocytosis Association Student Scholarship Program Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith

Welcome to Episode 088 of the Beyond the Diagnosis Podcast. During Rare Disease Week 2026, we’re shining a spotlight on something that moves our community forward in powerful ways: advocacy. On this episode we sit down with Nate Saelinger — a Histiocytosis Youth Ambassador, high school sophomore, and passionate advocate — who went to Capitol Hill to participate in Rare Disease Week with the EveryLife Foundation for Rare Diseases. Diagnosed with Langerhans Cell Histiocytosis as a child and continuing to manage diabetes insipidus, Nate is using his voice to help shape conversations around research funding, policy, access to medication and the future of rare disease care. His story is a powerful reminder that advocacy has no age limit — and that sharing lived experience can drive real change. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Rare Disease Week with Every Life Foundation Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith

Welcome to Episode 087 of the Beyond the Diagnosis Podcast. In this episode Kathy welcomes Dr. Karen Rech from the Mayo Clinic to discuss her groundbreaking research on Erdheim-Chester Disease (ECD). The conversation delves into the challenges of diagnosing ECD, highlighting the significance of cyclin D1 overexpression as a potential marker. Dr. Rech explains how this discovery aids in distinguishing ECD from other histiocytic neoplasms and reactive infiltrates, offering hope for quicker and more accurate diagnoses and emphasizes the importance of multidisciplinary collaboration and the advancements in understanding ECD, providing valuable insights for both clinicians and patients. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Read the abstract Cyclin D1 Overexpression With Cytoplasmic Localization Distinguishes Erdheim-Chester Disease From Reactive Histiocytic Infiltrates here: The American Journal of Surgical Pathology Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 086 of the Beyond the Diagnosis Podcast.  Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2025.  Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much hope for the future. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast:  Watch the full Hopecast 2023 here: https://www.youtube.com/live/YBAGz22cujE?si=OSc8Aq_r3aaEQlh2 Learn more about the Histio Ambassador Program here: https://histio.org/histio-ambassadors/ Podcast episodes 27 and 48 that talk about our research grant program: Episode 27 – Seeds of Funding: The Foundation of the Research Grants Program Episode 48 – Cultivating the Seeds of Research: Understanding the Scoring Process Learn all about the Histiocyte Society here: https://histiocytesociety.org  To make a year end gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right. Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc  Music: “Heroes” by Noah Smith Sound effects from Pixabay 

Welcome to Episode 085 of the Beyond the Diagnosis Podcast. It’s that time of year where all thoughts shift to gratitude and we wanted to take a moment to express our thankfulness to our histio community for all you do throughout the year!  Join Kathy for this heartfelt message of thanksgiving and hope. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Make your year-end gift: www.histio.org/give2025  Histiocytosis Association mailing address: 332 N Broadway, Pitman, NJ 08071 Don’t forget to tune in for the Hopecast, Tuesday, December 2 at 7:00pm Eastern Time.  We will be streaming live on YouTube, Facebook and Instagram! Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 084 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the brand new President of the Histiocyte Society, Dr. Vasanta Nanduri.  We talk about how she got involved in medicine, her history with the Society and her vision for the future.  If you like keeping up on all things histio, this is an episode not to be missed! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Learn more about the Histiocyte Society’s Strategic Plan Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith  

Welcome to Episode 083 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the Histiocytosis Association’s brand new Executive Director, Jen Silvers, as we continue on in our staff highlight series!  Listen in as we learn about Jen’s hobbies, background and what led her to this role.  You might find yourself surprised! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 082 of the Beyond the Diagnosis Podcast. In this episode, we’re exploring the personal journeys of patients and families navigating the complex world of HLH and delving into the transformative power of collaboration between organizations dedicated to advancing physician education on rare diseases. Tune in to learn how as the patient voice is brought into the conversation, these collaborative efforts are shaping the future of healthcare and the opportunity we had to partner with NORD and Sobi to create a course through MedLive that provides continuing medical education to physicians all over the world. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Access the CME Course Sign up for the Histio Blue Ribbon Run  Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc  Music: “Heroes” by Noah Smith Sound effects from Pixabay 

Welcome to Episode 081 of the Beyond the Diagnosis Podcast. In this conversation, we turn the spotlight on the voice behind Beyond the Diagnosis. With nearly 17 years at the Histiocytosis Association, Kathy Wisniewski discusses her multifaceted role, including managing the research grant program, planning the Histiocyte Society annual meeting, and her passion for podcasting. Fueled by her own experience with rare disease, Kathy emphasizes the importance of community, collaboration, and the impact of her work on patients and families affected by histiocytosis.   Additional Show Notes: Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support  Don’t miss out on the Histiocytosis Association’s Patient & Family Summit coming up in September.  For more information and to register, visit 2025 Histiocytosis Summit | Histiocytosis Association  Interested in learning more about the North American Consortium for HistiOcytosis (NACHO)?  Take a listen to this early episode of Beyond the Diagnosis.  Resources mentioned in the podcast: Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith  

Welcome to Episode 080 of the Beyond the Diagnosis Podcast. In this conversation, Kathy Wisniewski and Kristin Nesensohn discuss the upcoming Histio Patient and Family Summit, highlighting its significance in fostering education, connection, and support within the histiocytosis community. Join them as they explore the inspiration behind the summit, the importance of partnerships between patients and clinicians, and the various activities planned for the event, including interactive learning opportunities and a youth lounge. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Register for the Patient and Family Summit!  Early bird registration ends June 30, 2025! Questions about the summit?  Reach out to [email protected] Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 079 of the Beyond the Diagnosis Podcast. In this episode, we’re sharing a previously recorded webinar that was presented to the histio community just a few months ago. It’s an important and insightful conversation about the often-overlooked connection between endocrine conditions and histiocytosis. Drs. Polyzois Makris and Gaurav Goyal join us to explore their research and the critical role endocrinologists play in recognizing symptoms early, guiding diagnosis, and supporting long-term monitoring. Offering helpful takeaways for healthcare providers and patients and families alike, they walk us through the workup process, highlight how our understanding of these rare diseases continues to grow, and present valuable knowledge and real-world insight into improving care for those affected by histiocytic disorders. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Learn all about the Histiocyte Society here: https://histiocytesociety.org  To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right. Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc  Music: “Heroes” by Noah Smith 

Welcome to Episode 078 of the Beyond the Diagnosis Podcast. Listen in as Hank shares his courageous journey from being misdiagnosed, to finding his purpose in life to help others affected by histiocytosis in the most practical of ways. Instead of allowing his diagnosis to define him, Hank found deep purpose in reaching out to fellow patients and caregivers, participating in clinical trials, and pushing for legislative change in the world of rare disease. Join us as Hank shares how his faith, resilience, and relentless hope are helping to shape a better future for others living with histiocytosis. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Patient Registries Information: Histiocytosis Follow-Up Study: email [email protected] or call 866-438-1640 INTO-HLH Registry: www.hlhregistry.org Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc  Music: “Heroes” by Noah Smith 

Welcome to Episode 077 of the Beyond the Diagnosis Podcast. Curious about the latest research on treating Erdheim-Chester disease (ECD)? In this episode, we’re chatting with Drs. Goyal, Abeykoon, and Acosta-Medina about their study on MEK inhibitors and what it means for patients. We’ll explore how our understanding of histiocytic disorders has evolved, the challenges doctors face in choosing the right treatment, and why real-world data is so important. Plus, we’ll dive into how genetic mutations can affect patient responses and why ongoing research and collaboration are key to improving outcomes. Tune in for an inside look at the latest in ECD research! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Survivorship Study: https://histio.org/uab-survivorship-study-and-its-impact-so-far/ Email [email protected]  To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right. Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc  Music: “Heroes” by Noah Smith 

Welcome to Episode 076 of the Beyond the Diagnosis Podcast. In this episode we’re bringing you the third in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. In this episode we’ll meet Erica, our Database Coordinator. Join us as Erica shares her journey to the Association, the challenges and intricacies of her role, and her message to the histio community. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Welcome to Episode 075 of the Beyond the Diagnosis Podcast.  We're diving into part 3 of the 2024 HopeCast replay, originally broadcast live on Giving Tuesday in December 2024.  This episode is focused on the third and final pillar of Research and the progress we’re making towards finding better treatments and a cure!  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:    Learn all about the Histiocyte Society here: https://histiocytesociety.org   To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/histiocytosisassoc    Music: “Heroes” by Noah Smith 

Welcome to Episode 074 of the Beyond the Diagnosis Podcast.  Come along with us in this episode as we share part 2 of a replay of the 2024 HopeCast, originally broadcast live on Giving Tuesday in December 2024.  This episode is focused on the second pillar of Support and how it provides hope for patients and families.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:    Learn all about the Histiocyte Society here: https://histiocytesociety.org   To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/histiocytosisassoc    Music: “Heroes” by Noah Smith  Sound effects from Pixabay 

Welcome to Episode 073 of the Beyond the Diagnosis Podcast.  Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2024.  Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much hope for the future.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:  Learn more about the Histio Ambassador Program here: https://histio.org/histio-ambassadors/  For more information about our Peer Chats, check out our page here: https://histio.org/resource-overview/peer-chats/  Get more information about the Histio Scholarship Program here: https://histio.org/resource-overview/scholarship-program/   Podcast episodes 27 and 48 that talk about our research grant program:  Episode 27 – Seeds of Funding: The Foundation of the Research Grants Program  Episode 48 – Cultivating the Seeds of Research: Understanding the Scoring Process  Learn all about the Histiocyte Society here: https://histiocytesociety.org   To make a year end gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/histiocytosisassoc    Music: “Heroes” by Noah Smith  Sound effects from Pixabay 

Welcome to Episode 072 of the Beyond the Diagnosis Podcast. In this episode we’re learning about the most recent Histiocyte Society Annual Meeting right from the horse’s mouth! Join us as Histiocyte Society President, Dr. Kim Nichols, shares all of the highlights from this most unique and exciting meeting! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support     Resources mentioned in the podcast: Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter/X: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis   Music: “Heroes” by Noah Smith

Welcome to Episode 071 of the Beyond the Diagnosis Podcast. In this episode we’re bringing you the second in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. Ion this episode we’ll meet Danielle, our Chief Financial Officer. Join us as Danielle shares her journey to the Association, the challenges and rewards of her role, and her message to the histio community. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Resources mentioned in the podcast: ·    Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/@Histiocytosis   Music: “Heroes” by Noah Smith

Welcome to episode 070 of the Beyond the Diagnosis podcast.  In this episode, Deanna Fournier guest hosts interviews with Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders. Part 2 of a 2-part series, this episode focuses specifically on children. They explain the eligibility criteria for applying for Social Security benefits, the role of disability representatives, and the importance of maintaining records. They also address the process of appealing denials and provide contact information for those seeking assistance.   Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Resources mentioned in the podcast: ·       National Association of Disability Representatives ·       SSA Office Locator ·      Should I Quit My Job Before Applying for Disability? ·      Social Security Eligibility ·       Contact Jane at Foothills Disability – 1-828-394-9657 or [email protected]  Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis   Music: “Heroes” by Noah Smith

Welcome to episode 069 of the Beyond the Diagnosis podcast.  In this episode, Deanna Fournier guest hosts interviews with Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders, specifically adults. They discuss the recent expansion of the compassionate allowances list, which allows for expedited disability requests and provides access to benefits such as Medicaid and Medicare, eligibility criteria for applying for Social Security benefits, and the role of disability representatives. They also address the process of appealing denials and provide contact information for those seeking assistance.  With a series of questions posed by the histio community, we know this is an episode you will find extremely valuable!   Resources mentioned in the podcast:  ·       Applying for Social Security Disability ·       Should I Quit My Job Before Applying for Disability? ·       Social Security Eligibility Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis   Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Music: “Heroes” by Noah Smith

Welcome to Episode 068 of the Beyond the Diagnosis Podcast. In this episode we’re excited to kick off our new series, “Meet the Team,” where we introduce you to the dedicated individuals working behind the scenes. Our first guest is Peter Yanefski, our Strategic Communications Associate, who plays a vital role in shaping the voice and outreach of our organization. Join us as Peter shares his journey to the Association, the challenges and rewards of his role, and his vision for the future of our communications strategy. Plus, get a glimpse into the person behind the emails, newsletters, and social media posts you see every day! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback! Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released. We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support Resources mentioned in the podcast: Physician Finder: Histio.org/find-a-doctor Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis Music: “Heroes” by Noah Smith

Welcome to Episode 067 of the Beyond the Diagnosis Podcast. In this episode we’re diving into the innovative Young Investigator initiatives within the Histiocyte Society, spotlighting the newly formed Young Investigator and Social Media committees. We explore their goals and strategies, highlighting how these efforts are cultivating the next generation of leaders and researchers in the world of histiocytosis. Join us as we discuss the exciting developments and the impact these committees are making on the future of the Society. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Resources mentioned in the podcast: Overview of the Histiocyte Society Strategic Plan: https://histiocytesociety.org/Strategic-Plan Follow the Histiocyte Society on social media: Twitter/X: @HistiocyteSoc LinkedIn: https://www.linkedin.com/company/histiocyte-society/ Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis Music: “Heroes” by Noah Smith

Welcome to Episode 066 of the Beyond the Diagnosis Podcast. In this episode we’re diving into the complex emotions surrounding grief patients and families dealing with histiocytosis. We’ll talk about the different types of grief, the stages of healing, and the importance of dedicated grief support groups. Join us for an enlightening and inspiring conversation about finding strength and community amidst the challenges of histiocytosis. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: ·       Information on the Histiocytosis Association’s various Peer Support groups: https://histio.org/resource-overview/peer-chats/ ·       Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis   Music: “Heroes” by Noah Smith

Welcome to Episode 065 of the Beyond the Diagnosis Podcast. In this episode we’re talking with Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: App for tracking fluids: IUFLOW UK Pituitary Foundation World Alliance of Pituitary Organizations (WAPO) Raymond A. Wood Foundation Facebook Group: Got Arginine Vasopressin Deficiency? ·       Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis Music: “Heroes” by Noah Smith

Welcome to Episode 064 of the Beyond the Diagnosis Podcast. In honor of Volunteer Appreciation Month, join us for a special episode dedicated to celebrating the incredible contributions of our devoted volunteers and Ambassadors. Tune in as we sit down with two of our Ambassadors who generously share their volunteer journey and the impactful initiatives they're championing in their commitment to the histiocytosis cause. Get inspired by their selfless dedication and passion as they continue to make a difference in the lives of those affected by histio. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Rare Disease Legislative Advocates (RDLA) - https://everylifefoundation.org/rare-advocates/ Histiocytosis Association Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at [email protected] Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis Music: “Heroes” by Noah Smith

Welcome to Episode 063 of the Beyond the Diagnosis Podcast. In this episode we hear about the caregiver experience from Histio Ambassador and mom to a histio warrior, Barb Adams.  She is sharing an honest and encouraging perspective which will leave you with hope and encouragement for your own histio journey.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support     Resources mentioned in the podcast:  Histio Hike Shenandoah: www.histiohikeshenandoah.com   Histiocytosis Association Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at [email protected]  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smit

Welcome to Episode 062 of the Beyond the Diagnosis Podcast. In this episode we’re talking with 2 histio patients diagnosed as children to learn about their inspirational stories of turning their adversity into opportunities and the ripple effect that this can have on others facing their own adversity. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback! Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Resources mentioned in the podcast: Giving Rocks Foundation: https://givingrocksfoundation.org/ National Marrow Donor Program (Formerly Be the Match): https://bethematch.org/ Brand New Histiocytosis Association Youth Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at [email protected] Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/@Histiocytosis   Music: “Heroes” by Noah Smith

Welcome to Episode 061 of the Beyond the Diagnosis Podcast. Deanna Fournier joins us again, this time with Claudio DiGirolamo, President and Director of the Histiocytosis Association of Canada, to talk about coming together to fund research and the power of international collaboration. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback! Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Histiocytosis Association of Canada: https://histiocytosis.ca/ Beyond the Diagnosis Episode 027 – Part 1 of 3: Seeds of Funding – The Foundation of the Research Grant Program Beyond the Diagnosis Episode 048 – Part 2 of 3: Cultivating the Seeds of Research: Understanding the Scoring Process Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter/X: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/@Histiocytosis Music: “Heroes” by Noah Smith

Additional Show Notes: Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: Siegel Rare Neuroimmune Association (SRNA)- https://wearesrna.org/ Book: Smart But Scattered Book Series: https://www.amazon.com/s?k=smart+but+scattered&crid=3FITW3A7C3ZRH&sprefix=smart+but+scattered%2Caps%2C256&ref=nb_sb_noss_1 Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube:   Music: “Heroes” by Noah Smith

Welcome to Episode 059 of the Beyond the Diagnosis Podcast.  Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2023.  Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much hope for the future. Additional Show Notes: Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast:  Watch the full Hopecast 2023 here: https://www.youtube.com/live/oYNx44rCpxI?si=s21MoAZq8DQlrXKj Learn more about the Histio Ambassador Program here: https://histio.org/histio-ambassadors/ Watch Ambassador, Megan Butler’s video here: https://youtu.be/tPX2s_lvHxs For more information about our Peer Chats, check out our page here: https://histio.org/resource-overview/peer-chats/ See the full video with Ambassador Kevin Maselli talking about his journey with LCH and the importance of awareness here: https://youtu.be/VwpDrRRMEP8 Learn more about the Histiocytosis Association of Canada: www.histio.ca Learn more about the OR Asociacion: https://www.orasociacion.org/ Get more information about the Histio Scholarship Program here: https://histio.org/resource-overview/scholarship-program/ See the full video from Histio Warrior, Kayla Kliminiski: https://youtu.be/5gi5rrT5fpk Podcast episodes 27 and 48 that talk about our research grant program: o   Episode 27 – Seeds of Funding: The Foundation of the Research Grants Program o   Episode 48 – Cultivating the Seeds of Research: Understanding the Scoring Process Video from 2022 grant recipient, Dr. Scott Canna (unfortunately we were unable to obtain the full video): https://youtu.be/03ef_FqUhNQ Learn all about the Histiocyte Society here: https://histiocytesociety.org To make a year end gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right. Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/histiocytosisassoc If you'd like to support this podcast so we can continue to bring you the useful and timely information you need on your journey with histiocytosis, check out our support page here: Beyond the Diagnosis • A podcast on Spotify for Podcasters Music: “Heroes” by Noah Smith Sound effects from Pixabay

Welcome to Episode 058 of the Beyond the Diagnosis Podcast. Join us as we talk with 3 Histio Ambassadors, Melinda Atnip, Ana Valdez and Nate Milam, about their experiences at the recent Global Genes conference and how their mutual goal is to show up, share their voice and make an impact. Additional Show Notes: Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: ·       Histio Ambassador Program: https://histio.org/ambassador-volunteer-program/ ·    For more information about Histiocytosis Awareness Month: https://histio.org/get-involved/raise-awareness/ ·    World Orphan Drug Congress: https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm ·     Global Genes: https://www.globalgenes.org      ·    Imperfect Joy: https://imperfectjoy.com/ ·     Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc Music: “Heroes” by Noah Smith

Welcome to episode 057 of the Beyond the Diagnosis podcast.  In this mini episode, as we settle into autumn, let’s reflect on the changing of the seasons and how that’s like our histio journeys. Another full length episode will be back in November! We'd love to hear your feedback!  Let us know if this mini episode touched you!  Reach out to [email protected] and tell us your thoughts. Music: Heroes by Noah Smith

Welcome to Episode 056 of the Beyond the Diagnosis Podcast. Listen in as Barry shares his courageous journey living with Erdheim-Chester Disease (ECD) and the hope he found through family, friends, and his medical team. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: ·    For more information on ECD: https://histio.org/histiocytic-disorders/erdheim-chester-disease/ ·   ECD Global Alliance: www.erdheim-chester.org ·   For more information on the Ty Fighters 5K: https://histio.org/get-involved/fundraising-events/ ·   Patient Registries Information: o  Histiocytosis Follow-Up Study: email [email protected] o INTO-HLH Registry: www.hlhregistry.org Disclaimer: Any references to specific people or healthcare providers do not represent the views or opinions of the Histiocytosis Association or Histiocyte Society. ·  Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/histiocytosisassoc Commercial Background Music: Cinematic Battle Music (Star Wars Style) Music by Luis Humanoide from Pixabay “Wake Up to the Renaissance” Music by AudioCoffee from Pixabay Ambient Inspiration” Music by The Mountain from Pixabay Music: “Heroes” by Noah Smith

Welcome to Episode 055 of the Beyond the Diagnosis Podcast. Join us as we talk with 2 Histio Ambassadors, Drew Freedman and Nate Milam, about the importance of advocacy and awareness in the quest to find a cure. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback! Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Resources mentioned in the podcast: Histio Ambassador Program: https://histio.org/ambassador-volunteer-program/ For more information about Histiocytosis Awareness Month: https://histio.org/get-involved/raise-awareness/ World Orphan Drug Congress: https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm How to find your state representatives: https://www.house.gov/representatives/find-your-representative Get alerts for different things going on at the federal level including legislation that is on its way to the President’s desk: https://www.congress.gov/get-alerts Histiocytosis Association National Conference Information: https://www.histio.org/nationalconference Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/histiocytosisassoc     Commercial Background Music: o “Wake Up to the Renaissance” Music by AudioCoffee from Pixabay o   "Ambient Inspiration” Music by The Mountain from Pixabay Theme Music: “Heroes” by Noah Smith

Welcome to episode 054 of the Beyond the Diagnosis podcast.  In this episode of 3-Minute Thursdays, Histiocytosis Association Executive Director, Deanna Fournier shares her experience in sometimes not having the motivation she needs, but how a change in mindset can give you just what you need to continue on! Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey. Deanna is the Executive Director of the Histiocytosis Association and an LCH survivor.  We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. Music: Walk Together by Olexy

Welcome to Episode 053 of the Beyond the Diagnosis Podcast. In this episode Dr. Gaurav Goyal not only gives some practical tips on how to deal with various non-organ challenges with histiocytosis, but he also shares information about his survivorship study which is so crucial to learning how histiocytosis patients can move from surviving to thriving. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Please consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: ·       To learn more about the survivorship study: https://histio.org/wp-content/uploads/2023/07/Histiocytosis-Follow-Up-Study.pdf Call the study line at: 866-438-1640 or Email [email protected] Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/histiocytosisassoc Music: “Heroes” by Noah Smith

Welcome to episode 052 of the Beyond the Diagnosis podcast.  In this episode of 3-Minute Thursday, Histiocyte Society Secretariat and Beyond the Diagnosis Podcast host, Kathy Wisniewski, shares her thoughts on why we should strive to live in the present moment, especially in the face of a rare disease diagnosis. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.  We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts.  Music: Walk Together by Olexy 

Welcome to episode 051 of the podcast.  In this episode of 3-Minute Thursdays, Histio mom and Histiocytosis Association Chairwoman, Tracy Brown talks about how good friendships can be a source of healing whether you have just a few friends or many. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.  Tracy is mom to Ian, who is an LCH survivor.  She is also the Chairwoman of Histiocytosis Association Board of Trustees and proud host of the annual Histio Hike Shenandoah.    We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts.  Music: Walk Together by Olexy 

Welcome to episode 050 of the podcast.  In this episode of 3-Minute Thursdays, Histio Ambassador and HLH warrior, Megan Wileman, shares her experience with secondary HLH and how important it is for us to share our stories to raise awareness and know we’re not alone. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey. We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. Music: Walk Together by Olexy

Welcome to episode 049 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocytosis Association Outreach Program Coordinator Melinda Atnip shares how music has impacted her own journey as a caregiver of someone with histiocytosis and how it can truly help with healing. Join us every Thursday and escape for 3 short minutes into a place of hope and encouragement on your histio journey. Melinda is the Outreach Program Coordinator for the Histiocytosis Association and a caregiver for her husband, Barry, who was diagnosed with ECD. We'd love to hear your feedback! Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. Article referenced in today's episode: How Music Heals - The Work of a Music Therapist Music: Walk Together by Olexy

Welcome to Episode 048 of the Beyond the Diagnosis Podcast. In this episode we’re diving into part 2 of 3 about our research grant program.  Today we’ll talk about how grant applications are scored and how the Histiocyte Society’s Scientific Committee makes their recommendations to the HA’s Board. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].  Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released. We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support   Resources mentioned in the podcast: To learn more about the Histiocyte Society: www.histiocytesociety.org To learn more about the Histiocyte Society’s Scientific Committee: https://histiocytesociety.org/Committees Information about previous grants awarded through our Research Grant Program can be found here: https://histio.org/research/grants-awarded/ Follow the Histiocytosis Association on social media: §  Facebook: https://www.facebook.com/histio §  Twitter: @histiocytosis §  Instagram: histiocytosis_association §  YouTube: https://www.youtube.com/histiocytosisassoc Music: “Heroes” by Noah Smith

Welcome to episode 047 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocytosis Association Strategic Communications Associate, Peter Yanefski, shares how we can all push through the toughest of times. Join us every Thursday and escape for 3 short minutes into a place of hope and encouragement on your histio journey. We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. If you'd like to support this podcast financially so we can keep bringing you relevant and timely information for your histio journey, please visit https://podcasters.spotify.com/pod/show/histio/support Music: Walk Together by Olexy

Welcome to episode 046 of the Beyond the Diagnosis podcast.  In this episode of 3-Minute Thursdays, Histiocytosis Association Executive Director, Deanna Fournier shares how we may not be able to control circumstances in our lives, but there are some things we CAN do. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey. Deanna is the Executive Director of the Histiocytosis Association and an LCH survivor.  Peer to Peer Support Calls: https://histio.org/resource-overview/peer-chats/ We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. Music: Walk Together by Olexy

Welcome to episode 045 of the Beyond the Diagnosis podcast.  In this episode of 3-Minute Thursday, Histiocyte Society Secretariat and Beyond the Diagnosis Podcast host, Kathy Wisniewski, refers to a well-known historical figure to demonstrate the power of never giving up. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey. We'd love to hear your feedback!  Let us know if a 3-Minute Thursday touched you!  Reach out to [email protected] and tell us your thoughts. Music: Walk Together by Olexy