Beyond the Diagnosis

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 hi...

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 a...

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...

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 t...

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...

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 po...

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...

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 podcast@histio.org.  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...

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...

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...

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 podcast@histio.org and tell us your thoughts. Music:...

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 podcast@histio.org.  Take a screenshot and tag us @histiocytosis_a...

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 podcast@histio.org.  Take a screenshot and tag us @histiocytosis_associati...

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 o...

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,...

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 encourageme...

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 su...

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 hea...

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 h...

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 podcas...

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...

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 Execu...

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...

Welcome to episode 044 of the podcast.  In this episode of 3-Minute Thursdays, Histio dad and Histiocytosis Association Ambassador, Mark Ross talks about the power of kind words and how to celebrate National Say Something Nice Day. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey. Mark is dad to 15-year old Ben, who was diagnosed with...

Welcome to episode 043 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocytosis Association Strategic Communications Associate, Peter Yanefski, talks about our furry – and not-so-furry – animal friends and the joy and therapy they can bring to our lives. Join us every Thursday and escape for 3 short minutes into a place of hope and encouragement on your histio journ...