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: 

• 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