Shows
Beyond the DiagnosisEpisode 081 - Meet the Team: Behind the Scenes with Kathy, the Histiocyte Society Secretariat and More!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...2025-07-231h 06Beyond the DiagnosisEpisode 080 - Histio Patient and Family Summit - Your Guide to this Exciting EventWelcome 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...2025-06-2539 minBeyond the DiagnosisEpisode 079 - From Endocrinopathy to Diagnosis of a Histiocytic DisorderWelcome 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 th...2025-05-2835 minBeyond the DiagnosisEpisode 078 - From Misdiagnosis to Mission – One Patient’s Journey with Rare DiseaseWelcome 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. L...2025-04-2357 minBeyond the DiagnosisEpisode 077 - MEK Inhibitors in ECDWelcome 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...2025-03-2625 minBeyond the DiagnosisEpisode 076 - Meet the Team: Behind the Scenes with Erica, Our Database GuruWelcome 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 pod...2025-02-2634 minBeyond the DiagnosisEpisode 075 - 2024 HopeCast Part 3 - ResearchWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
Be sur...2025-01-2250 minBeyond the DiagnosisEpisode 074 - 2024 HopeCast Part 2 - SupportWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear you...2025-01-1544 minBeyond the DiagnosisEpisode 073 - 2024 HopeCast Part 1 - Awareness
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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
2024-12-2658 minBeyond the DiagnosisEpisode 072 - Highlights from the 40th Annual Meeting of the Histiocyte SocietyWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear yo...2024-11-2751 min
Momsday BunkerMeet Zuly; A story about strength, rare disease, advocating, medical miracles, Systemic Juvenile Idiopathic Arthritis and Secondary Hemophagocytic Lymph Histiocytosis.She is more fierce than a mountain lion in Big Ben! Meet Zuly, a mom of three, a courageous advocate for her children and other parents who have children with rare diseases. From standing up to the medical industry to taking on Capitol Hill, Zuly has worked tirelessly to not only save her daughter’s life, but to make the changes necessary to save others. Her journey began when her third child was diagnosed with Systemic Juvenile Idiopathic Arthritis and Secondary Hemophagocytic Lymph Histiocytosis. Join us in the Bunker to day to discuss mama trauma, motherhood, momsday moments, Mexico, Ir...2024-11-211h 09
Ophthalmology JournalcfDNA in Ocular HistiocytosisDr. Rajesh Rao speaks with Dr. Jasmine H. Francis on whether sequencing of plasma-derived ctDNA can noninvasively diagnose ocular-involving histiocytosis. From her Ophthalmology Science article, “Plasma-Derived Cell-Free DNA for the Diagnosis of Ocular-Involving Histiocytosis.” Plasma-Derived Cell-Free DNA for the Diagnosis of Ocular-Involving Histiocytosis. Francis, Jasmine H. et al. Ophthalmology Science, Volume 4, Issue 5.2024-11-0728 minBeyond the DiagnosisEpisode 071 - Meet the Team: Behind the Scenes with Danielle, Our Financial Officer ExtraordinaireWelcome 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...2024-10-2331 minBeyond the DiagnosisEpisode 070 - Navigating Social Security & Disability Benefits for Children: Compassionate Allowance Expansion for HistiocytosisWelcome 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...2024-09-2532 minBeyond the DiagnosisEpisode 069 - Navigating Social Security & Disability Benefits for Adults: Compassionate Allowance Expansion for HistiocytosisWelcome 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 se...2024-09-1832 minBeyond the DiagnosisEpisode 068 – Meet the Team: Behind the Scenes with Peter, Our Strategic Communications MaestroWelcome 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, newsle...2024-08-2827 minBeyond the DiagnosisEpisode 067 - Fostering the Next Generation: Young Investigator Initiatives Within the Histiocyte SocietyWelcome 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 id...2024-07-2433 minBeyond the DiagnosisEpisode 066 - Working Through Grief - TogetherWelcome 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 podcast@histio.org.
2024-06-2639 minBeyond the DiagnosisEpisode 065 - AVP-Deficiency Explained: Understanding and Managing a Rare ConditionWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
2024-05-221h 02Beyond the DiagnosisEpisode 064 - Voices of Dedication: Honoring Our Histio VolunteersWelcome 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...2024-04-2429 minBeyond the DiagnosisEpisode 063 - Heartbeats of Hope: The Histio CaregiverWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
2024-03-2747 minBeyond the DiagnosisEpisode 062 - From Adversity to OpportunityWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
Be sure...2024-02-281h 05Beyond the DiagnosisEpisode 061 - The Fruits of Our Labor – Joining Together to Fund ResearchWelcome 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 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 not...2024-01-2449 minBeyond the DiagnosisEpisode 060 – Navigating Histiocytosis from a Neuropsychological PerspectiveAdditional 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 consider supporting this podcast financially so we can continue to bring you relev...2023-12-2757 minBeyond the DiagnosisEpisode 059 - Hopecast 2023Welcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’...2023-12-201h 57Beyond the DiagnosisEpisode 058 - Global Genes Conference: Showing Up and Making an ImpactWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to...2023-12-1356 min
Blood PodcastFractionated gemtuzumab ozagamicin Dosing in Elderly AML Patients; Loss-of-function of ENT3 drives histiocytosis; Alternative splicing of CD20 5’-UTR in B-lymphomasIn this week's episode we'll discuss if fractionated dosing of gemtuzumab ozogamicin provide additional benefit over a single dose in older adults with AML. Then, we'll consider how the loss-of-function of ENT3 drives histiocytosis. Researchers describe a novel pathway leading to histiocytosis that involves hyperactivation of TLR-MAPKinase signaling. This suggests a potential benefit of MAPKinase -directed targeted therapy in a range of histocytoses. Finally we'll discuss unraveling resistance mechanisms to anti-CD20 treatments in B-cell malignancies. Through alternative splicing, the MS4A1 gene encoding human CD20 generates multiple mRNA isoforms with distinct 5’ untranslated regions. 2023-11-1619 minBeyond the DiagnosisEpisode 057 - The Changing SeasonsWelcome 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: Heroes by Noah Smith
2023-10-2503 minBeyond the DiagnosisEpisode 056 - Standing Up to ECD with Courage and HopeWelcome 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_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...2023-09-2738 minBeyond the DiagnosisEpisode 055 - Advocacy and Awareness - 2 Pillars of Finding a CureWelcome 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_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...2023-08-2356 minBeyond the DiagnosisEpisode 054 - 3-Minute Thursday - Motivation vs DeterminationWelcome 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...2023-07-2702 minBeyond the DiagnosisEpisode 053 - Surviving to Thriving - Going Truly Beyond the Diagnosis w/ Dr. Gaurav GoyalWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d lov...2023-07-2639 minBeyond the DiagnosisEpisode 052 - 3-Minute Thursday - The Gift of Being PresentWelcome 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 podcast@histio.org and tell us your thoughts.
Music...2023-07-2003 minBeyond the DiagnosisEpisode 051 - 3-Minute Thursday - Friendship in Difficult TimesWelcome 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 feedbac...2023-07-1303 minBeyond the DiagnosisEpisode 050 - 3-Minute Thursday - Share Your StoryWelcome 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 podcast@histio.org and tell us your thoughts.
Music: Walk Together by Olexy...2023-07-0603 minBeyond the DiagnosisEpisode 049 - 3-Minute Thursday - The Healing Power of MusicWelcome 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...2023-06-2903 minBeyond the DiagnosisEpisode 048 - Cultivating the Seeds of Research: Understanding the Scoring ProcessWelcome 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
B...2023-06-2834 minBeyond the DiagnosisEpisode 047 - 3-Minute Thursday - Pushing Through Tough TimesWelcome 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 podcast@histio.org and tell us your thoughts.
If you'd like to support this podcast financially so we can keep bringing you relevant and ti...2023-06-2202 min
Clippings: The Official Podcast of the Council for Nail DisordersNotes from the Field: First Reported US Cases of Tinea Caused by Trichophyton indotineae. Onycholysis and purpuric nail striae in a child. Nail involvement in Langerhans cell histiocytosis.Notes from the Field: First Reported US Cases of Tinea Caused by Trichophyton indotineae—New York City, December 2021–March 2023. Caplan AS, et al Morbidity and Mortality Weekly Report. 2023 May 5;72(19):536.Onycholysis and purpuric nail striae in a child. Yang L, Wang T, Liu Y. Pediatric Dermatology. 2023 Apr 18. Nail involvement in Langerhans cell histiocytosis and its association with multisystem presentation and lung involvement. Bonometti A, Passoni E, Finotto S, Berti E. Indian Journal of Dermatology, Venereology and Leprology. 2021 Oct 23;87(6):850-4.2023-06-2013 minBeyond the DiagnosisEpisode 046 - 3-Minute Thursday - ControlWelcome 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 kno...2023-06-1503 min
Help and Hope Happen HereOn today's podcast Deanna Fournier and Ana Valdez will discuss their battles against the blood cancer Langerhans Cell Histiocytosis, with Deanna being diagnosed at age 6 and Ana diagnosed 3 years after her symptoms began near the end of her pregnancyBoth Deanna Fournier and Ana Valdez suffered from the blood cancer Langerhans Cell Histiocytosis but at very different stages in their lives. Deanna , now the Director of the Histiocytosis Association, was diagnosed when she was 6 years old and Ana was diagnosed 3 years after her symptoms began to appear during the final trimester of her pregnancy. Both Deanna and Ana will talk about their involvement as they help other people who have been diagnosed with a form of cancer that is not as well known as many other forms of this disease. 2023-06-121h 03Beyond the DiagnosisEpisode 045 - 3-Minute Thursday - Don't Give Up!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 podcast@histio.org and tell us your thoughts.
Music: Walk Together by Olexy
2023-06-0803 minBeyond the DiagnosisEpisode 044 - 3-Minute Thursday - Say Something NiceWelcome 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 CNS isolated HLH. He is also a Histiocytosis Association Ambassador.
We'd love to hear your feedback! Let us know if a 3-Minute Thursday touched you! Reach out to podca...2023-06-0103 minBeyond the DiagnosisEpisode 043 - 3-Minute Thursday - Pets as TherapyWelcome 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 journey.
We'd love to hear your feedback! Let us know if a 3-Minute Thursday touched you! Reach out to podcast@histio.org and tell us your thoughts.
Music: Walk Together by Olexy
2023-05-2502 minBeyond the DiagnosisEpisode 042 - Mother Knows Best: An LCH Parent’s Journey w/ Mia GravianoWelcome to Episode 042 of the Beyond the Diagnosis Podcast. In this episode we invite the parent’s perspective into the conversation about histiocytosis and hear about a histio mom’s journey with this rare disease and her advice for those currently going through it.
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 notifie...2023-05-2435 minBeyond the DiagnosisEpisode 041 - 3-Minute Thursday - Confidence in Patient AutonomyWelcome to episode 041 of the podcast. In this episode of 3-Minute Thursdays, 25th Histio Ambassador, Nate Milam talks about the taking your care into your own hands and the power of the patient voice. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.
Nate is the 25th Histio Ambassador and an HLH survivor. We'd love to hear your feedback! Let us know if a 3-Minute Thursday touched you! Reach out to podcast@histio.org and tell us your thoughts.
Music:
Walk Together by Olexy
2023-05-1803 minBeyond the DiagnosisEpisode 040 - 3-Minute Thursday - National Nurses Week!Welcome to episode 040 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocytosis Association Outreach Program Coordinator Melinda Atnip celebrates some very important people – nurses! It’s National Nurses Week so be sure to thank your nurses next time you see them! 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...2023-05-1104 minBeyond the DiagnosisEpisode 039 - 3-Minute Thursday - Your Knowledge is Your ForceMay 4, 2023 3-Minute Thursday Host – Michelle Meadows
Welcome to episode 039 of the Beyond the Diagnosis podcast. It’s Star Wars Day and in this episode of 3-Minute Thursdays, histio mom, fundraising host and Histiocytosis Association Ambassador Michelle Meadows shares how your knowledge truly is your force. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.
Michelle’s son Ty is a histio warrior. Ty loves Star Wars and Michelle hosts a Star Wars themed fundraiser annually. Learn more about Michelle and all of our histio Ambassadors...2023-05-0403 minBeyond the DiagnosisEpisode 038 - 3-Minute Thursday - Self-EmpathyWelcome to episode 038 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursdays, Histiocytosis Association Executive Director, Deanna Fournier introduces the concept of self-empathy and how the things that we say to ourselves matter. 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 podcast@histio.org and tell us your thoughts.
2023-04-2702 minBeyond the DiagnosisEpisode 037 - Findings from a Rare Cancer Caregiver StudyWelcome to Episode 037 of the Beyond the Diagnosis Podcast. In this episode we highlight an incredible study on caregivers, a very important piece in the puzzle of histiocytosis. Join Kathy as she speaks with Drs. Allison Applebaum and Eli Diamond about their recently completed caregiver study, the benefits and meaning that come from caregiving and the needs that exist in this very important role.
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...2023-04-2626 minBeyond the DiagnosisEpisode 036 - 3-Minute Thursday - PharmacogeneticsWelcome to episode 036 of the podcast. In this episode of 3-Minute Thursdays, 25th Histio Ambassador, Nate Milam talks about the power of pharmacogenetics and how you can take pain management into your own hands. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.
Nate is the 25th Histio Ambassador and an HLH survivor.
Resources mentioned in the podcast:
Invitae - https://www.invitae.com/en
We'd love to hear your feedback! Let us know if a 3-Minute Thursday touched you! Reach out to p...2023-04-2002 minBeyond the DiagnosisEpisode 035 - 3-Minute Thursday - Choices!Welcome to episode 035 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, histio mom, Histio Ambassador and Association Fundraising and Events Coordinator, Allie McFadden, talks about how our choices can change our outlook on our circumstances! 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 podcast@histio.org and tell us your thoughts.
Music:
Walk Together by Olexy
2023-04-1303 minBeyond the DiagnosisEpisode 034 - 3-Minute Thursday - Positive ThinkingWelcome to episode 034 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocyte Society Secretariat and Beyond the Diagnosis Podcast host, Kathy Wisniewski, talks about the power of positive thinking and how you can exercise that positive thinking muscle! 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 podcast@histio.org and tell us your thoughts.
Music:
Walk Together by Olexy
2023-04-0603 minBeyond the DiagnosisEpisode 033 - 3-Minute Thursday - Self-Care is NOT SelfishMarch 30, 2023 3-Minute Thursday Host – Melinda Atnip
Welcome to episode 033 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursday, Histiocytosis Association Outreach Program Coordinator Melinda Atnip shares some thoughts on how we need to shift our mindset around self-care and some great ideas on how to do just that! 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.
Re...2023-03-3004 minBeyond the DiagnosisEpisode 032 - 3-Minute Thursday - Laughter as MedicineMarch 23, 2023 3-Minute Thursday Host – Peter Yanefski
Welcome to episode 032 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursdays, Histiocytosis Association Strategic Communications Associate, Peter Yenefski, shares his thoughts about how laughter is great medicine - and even shares a couple of jokes along the way! 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 podcast@histio.org and tell us your thoughts.
Mu...2023-03-2302 minBeyond the DiagnosisEpisode 031 - The Best of Beyond the Diagnosis - 2nd Anniversary Countdown SpecialWelcome to Episode 031 of the Beyond the Diagnosis Podcast. In this special 2nd Anniversary podcast, we celebrate this milestone by bringing you clips from the top 10 most listened to episodes. Join us as we count down from 10 to 1 and maybe you’ll find an episode that you want to go back and listen to!
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 hea...2023-03-2245 minBeyond the DiagnosisEpisode 030 - 3-Minute Thursday - GratitudeMarch 16, 2023 3-Minute Thursday Host – Deanna Fournier
Welcome to episode 030 of the Beyond the Diagnosis podcast. In this episode of 3-Minute Thursdays, Histiocytosis Association Executive Director, Deanna Fournier shares her thoughts about the benefits of taking time out to think of the things in your life that you’re grateful for. 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-M...2023-03-1603 minBeyond the DiagnosisEpisode 029 - 3-Minute Thursday - Ethnicity and MatchingMarch 9, 2023 3-Minute Thursday Host – Nate Milam
Welcome to episode 029 of the podcast. In this episode of 3-Minute Thursdays, 25th Histio Ambassador, Nate Milam talks about the challenges with ethnicity and matching and how his own match saved his life. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.
Nate is the 25th Histio Ambassador and an HLH survivor.
Resources mentioned in the podcast:
· Be the Match - https://bethematch.org/
We'd love to hear your feedback! Let us know...2023-03-0903 minBeyond the DiagnosisEpisode 028 - 3-Minute Thursday - Introduction to 3-Minute ThursdaysMarch 2, 2023 3-Minute Thursday Host – Kathy Wisniewski
In this debut episode of 3-Minute Thursdays, Kathy introduces this new “burst of hope” that we want to offer to our community. Join us every week and escape for 3 short minutes into a place of hope and encouragement on your histio journey.
Kathy is a staff member at the Histiocytosis Association. Her roles include managing the Association’s research grant program, hosting and producing the monthly podcast, Beyond the Diagnosis, and acting as Secretariat for the Histiocyte Society.
We'd love to hear your feedback! Let us know if a 3-Mi...2023-03-0203 minBeyond the DiagnosisEpisode 027 - Part 1 of 3 - Seeds of Funding - The Foundation of the Research Grants Program w/ Allie McFaddenWelcome to Episode 027 of the Beyond the Diagnosis Podcast. The first in a 3-part series, in this episode Kathy speaks with Allie McFadden, Association Fundraising Events Coordinator as we introduce you to our research grant process, starting at the very beginning – raising the money to fund the grants.
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 s...2023-02-2233 minBeyond the DiagnosisEpisode 026 - Education in the Histiocyte Society: What, Why and How w/ Dr. Michael HenryWelcome to Episode 026 of the Beyond the Diagnosis Podcast. Listen in as Dr. Michael Henry, Chair of the Histiocyte Society Education Committee, shares with us how education is at the forefront from pilot programs to abstract scoring and so much more!
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...2023-01-2539 minBeyond the DiagnosisEpisode 025 - The 2022 HopeCast and Year End UpdateWelcome to Episode 025 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. Learn all about the accomplishments of 2022 and what’s on board for 2023.
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 n...2022-12-281h 30Beyond the DiagnosisEpisode 024 - Family Group Collaborations - Working Together At Home and AbroadWelcome to Episode 024 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Dora Moustaka from Histio Hellas in Greece and Fernando Gotz from the OR Asociacion in Spain about their experience at the Histiocyte Society Annual Meeting in Stockholm and their hopes for the ongoing international family group 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your fe...2022-11-2355 minBeyond the DiagnosisEpisode 023 - Focus on the Future w/ New Histiocyte Society President, Kim NicholsWelcome to Episode 023 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Dr. Kim Nichols, the new President of the Histiocyte Society, and learns about her visions and goals for the next 3 years.
Are you looking for an opportunity to connect with other patients and families, as well as have access to essential medical and research information presented by leading histio physicians? Join us on November 10th and 11th for a Patient-Family Conference on Histiocytic Disorders in Memphis, Tennessee! This 1 1/2 day event will cover all histiocytic disorders and is beneficial for both adult & pediatric...2022-10-2650 minBeyond the DiagnosisEpisode 022 - Exciting Updates from Our 2021 Grant RecipientsWelcome to Episode 022 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 3 of the Association’s 2021 grant recipients about how they came up with their projects, what the grant application process was like for them and where their research stands today.
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 y...2022-09-281h 06
POP FM 99.9 - South Jersey's Positive Radio StationSeptember is Histiocytosis Awareness MonthIn this interview, John Salvatore speaks with Peter Yanefski, Strategic Communications Associate with the Histiocytosis Association in Pitman. Peter shares about the organization, how they are helping people with this rare disease, and about their upcoming Camp-Out-For-Histio event happening September 30th presented by Sobi. To learn more visit: https://histio.org/2022-09-1505 minBeyond the DiagnosisEpisode 021 - Rolling and Running Into SeptemberWelcome to Episode 021 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 3 of the Association’s new Ambassadors about the events they are planning for Awareness Month. Come roll and run into September with us!
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...2022-08-2441 min
The Pituitary World News PodcastS8E19: Diabetes Insipidus: a common condition for Histiocytosis and Pituitary conditionsToday's podcast focuses on an opportunity to learn about a group of rare diseases that share a common condition with pituitary disease. Histiocytosis or histiocytic disorders are a group of rare diseases that occur when there is an overproduction of white blood cells known as histiocytes that can lead to organ damage and tumor formation. DI impacts almost 50% of Histiocytosis patients and 35% of pituitary patients. I am pleased to welcome three advocates Deanna Fournier, Executive Director of the Histiocytosis Association; Kathleen Brewer, founder/president of the Erdheim-Chester Disease Global Alliance; and Claudio DiGirolamo, President of the Histiocytosis Association of Cana...2022-08-1642 minBeyond the DiagnosisEpisode 020 - Work Beyond the Diagnosis: A Conversation with Cancer and CareersWelcome to Episode 020 of the Beyond the Diagnosis Podcast. In this episode Kathy has a conversation with Rachel Becker, Deputy Director of Cancer and Careers, about the many useful resources the organization can provide to help with the issues that live at the intersection of a cancer diagnosis and work.
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!...2022-07-2752 minBeyond the DiagnosisEpisode 019 - BONUS: A 2022 Mid-Year Update from the Histiocytosis AssociationWelcome to Episode 019 of the Beyond the Diagnosis Podcast. In this mini-episode Kathy welcomes back Deanna Fournier, Executive Director of the Histiocytosis Association a mid-year update on what the Association has accomplished so far in 2022. If you’re curious about the exciting things that Association has been working on so far this year, then you don’t want to miss this episode!
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...2022-07-1541 min
Beyond the DiagnosisEpisode 018 - Beauty From Ashes - Channeling Grief to Make a Difference w/ Histio Spouse Michelle PhayWelcome to Episode 017 of the Beyond the Diagnosis Podcast. In this episode Kathy speaks with Michelle Phay, wife of Dave Phay, who lost his life to HLH in 2018. Michelle talks about their experience with the disease, how she navigated through tests, treatments and over 27 different erroneous diagnoses, and how her grief fuels her to fulfill Dave’s 3 parting wishes.
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...2022-06-221h 19Beyond the DiagnosisEpisode 017 - History Firsthand - An Account of the Origins of the Histiocytosis Association w/ Jeff ToughillWelcome to Episode 017 of the Beyond the Diagnosis Podcast. In this episode Kathy has the privilege of speaking with Jeff Toughill, Founder of the Histiocytosis Association and President until just a few short years ago to hear firsthand the inspiration behind the Association, how it started, how it grew and his vision for his very important legacy.
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...2022-05-2543 minBeyond the DiagnosisEpisode 016 - Introducing the Histiocytosis Association's Ambassador ProgramWelcome to Episode 016 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 2 Association staff members and 2 of our volunteer Ambassadors about the recently launched Histiocytosis Association Ambassador Program. Come get all your questions answered about what the program is, what it means and how you can get involved!
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 fe...2022-04-2753 minBeyond the DiagnosisEpisode 015 - Erdheim-Chester Disease – Information, Resources and Hope from the ExpertsWelcome to Episode 015 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with a panel of 4 experts on ECD – 2 physicians and 2 representatives from the ECD Global Alliance to talk about advancements in disease diagnosis, various resources available to ECD patients, families and caregivers, and 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
2022-03-2350 minBeyond the DiagnosisEpisode 014 - The Histiocytosis Association Scholarship ProgramWelcome to Episode 014 of the Beyond the Diagnosis Podcast. In this mini-episode Kathy has Deanna Fournier, Executive Director of the Histiocytosis Association, back on, this time to talk about the Histiocytosis Association Scholarship Program.
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...2022-03-0920 minBeyond the DiagnosisEpisode 013 - Hiking Our Way to a CureWelcome to Episode 013 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with Tracy Brown, histio mom and long-time supporter of the Histiocytosis Association. Tracy, along with her husband Ryan, started Histio Hike Shenandoah back in 2010 and in this episode we will learn all about the hike’s history, impact and how you can join us as we hike our way to 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.
Ta...2022-02-2344 minBeyond the DiagnosisEpisode 012 - Rare Disease Day 2022Welcome to Episode 012 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Debbie Drell, the Director of Membership for the National Office for Rare Disorders or NORD. Learn about Rare Disease Day 2022, how its impacted the rare disease world over the years and how you can get involved in Rare Disease Day this year.
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...2022-01-2530 min
MDforLivesLangerhans cell histiocytosis: Behind the MysteryThis episode is also available as a blog post: https://mdforlives.blog/2022/01/20/langerhans-cell-histiocytosis-behind-the-mystery/
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Send in a voice message: https://anchor.fm/mdforlives/message2022-01-2006 minBlood PodcastA spectrum of ALK-positive histiocytosis, and metabolites as biomarkers for GvHD diagnosis and risk assignmentOn today’s podcast, we’ll explore the largest case series to date describing ALK-positive histiocytosis. The authors provide new insights on the disease and its treatment with ALK inhibitors, which can provide durable responses. We’ll also review with a study that pinpoints alpha-ketoglutaric acid as consistently elevated in pediatric chronic GvHD, and finds unique metabolomic patterns that appear to distinguish different GvHD subtypes.2022-01-1314 min
A Tale of Two Hygienists PodcastFast Facts: Perio Edition “Periodontitis as a Manifestation of Systemic Disease - Histiocytosis Syndromes”On this week’s episode of Fast Facts - Perio Edition, Katrina Sanders, we are continuing the conversation around periodontitis as a manifestation of systemic disease discussing patients that present with histiocytosis syndromes. Quotes: “These are patients that if they have any type of a syndrome of histiocytosis, they, for whatever reason, experience an abnormal increase in the amount of histiocytes within their body.” “When patients experience systemic involvement, they may even experience lung problems, generalized lymphatic swelling, hormonal issues, or even enlargement of the spleen and liver or subs...2022-01-1005 minA Tale of Two Hygienists PodcastFast Facts: Perio Edition “Periodontitis as a Manifestation of Systemic Disease - Histiocytosis Syndromes”On this week’s episode of Fast Facts - Perio Edition, Katrina Sanders, we are continuing the conversation around periodontitis as a manifestation of systemic disease discussing patients that present with histiocytosis syndromes. Quotes: “These are patients that if they have any type of a syndrome of histiocytosis, they, for whatever reason, experience an abnormal increase in the amount of histiocytes within their body.” “When patients experience systemic involvement, they may even experience lung problems, generalized lymphatic swelling, hormonal issues, or even enlargement of the spleen and liver or subs...2022-01-1005 minBeyond the DiagnosisEpisode 011 - A Look into the North American Consortium for HistiocytosisWelcome to Episode 011 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with Sara Clyburn, Project Coordinator for NACHO, the North American Consortium for Histiocytosis for a conversation about what consortia are, why they are important and what NACHO is doing to drive research for histiocytosis toward better treatments and ultimately 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_association on Instagram. We’d lo...2021-12-2147 minBeyond the DiagnosisEpisode 010 - A Year End Update from the Histiocytosis AssociationWelcome to Episode 010 of the Beyond the Diagnosis Podcast. In this episode Kathy welcomes back Deanna Fournier, Executive Director of the Histiocytosis Association for a conversation about what the Association has accomplished this year and what is planned for 2022. If you’re curious about the exciting things that Association has been up to this year and the plans we have for the new year, then you don’t want to miss this episode!
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 p...2021-11-2339 minBeyond the DiagnosisEpisode 009 - Emotional Wellness Month and the Benefits of YogaWelcome to Episode 009 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Becka Florczyk of Becka Flo Yoga about Emotional Wellness Month and some things we can do to improve and protect our own emotional and physical wellness. Whether you enjoy a current yoga practice or you’ve never stepped on the mat, this episode is sure to convince you of the emotional and physical advantages yoga has waiting for you.
Let us know what you think! Leave us a review, drop us a comment or share a future podcast idea with us at po...2021-10-2632 minBeyond the DiagnosisEpisode 008 - The Ins and Outs of Clinical Trials and Our Research Grant ProgramWelcome to Episode 008 of the Beyond the Diagnosis Podcast. In this episode Kathy has a very interesting conversation with Dr. Melissa Hines from St. Jude Children’s Research Hospital about how clinical trials work and learns about the process and reasoning behind Dr. Hines’ current clinical trial project that was funded by the Association in 2019.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at kw@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
Have...2021-09-2240 min
WEEI/NESN Jimmy Fund Radio-TelethonGHS- Thayer Herr, 4, a Langerhans cell histiocytosis patient with his parents, Kara and William and his brother, Shepard join the showThayer was diagnosed with a rare form of cancer called Langerhans cell histiocytosis, a cancer of the jaw and ribs. He was diagnosed in May 2019 Thayer had an odd-looking spot in his mouth that Thayer’s dad, a dentist noticed. They had followed it for months. After seeing a pediatric dentist and oral surgeon, Thayer had a mass and a few teeth removed from his lower jaw and they were shocked when the biopsy results came back, revealing it was cancer. The day after receiving his diagnosis the family met with the team at the Ji...2021-08-2505 minBeyond the DiagnosisEpisode 007 - Why Raising Awareness is Critical and the Impact it Can HaveWelcome to Episode 007 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with 4 very special guests for a panel discussion about the importance of raising awareness, what 3 different organizations are doing during Histiocytosis Awareness Month and how you can get involved.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at kw@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
www.rarediseases.org
https://erdheim-chester.org/
ht...2021-08-2447 minBeyond the DiagnosisEpisode 006 - LCH to Bullying, How One Patient is Using Her Experiences to Make a DifferenceWelcome to Episode 006 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with histio patient, Carol Fragoso, as she shares her inspiring story of accepting and overcoming the obstacles that histiocytosis has caused in her life. It is a story of hope, encouragement and paying it forward.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at kw@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
If you or someone yo...2021-07-2740 minBeyond the DiagnosisEpisode 005 - Managing Stress in Difficult TimesWelcome to Episode 005 of the Beyond the Diagnosis Podcast. In this episode Kathy puts her knowledge as a health coach to use as she talks about the affects that stress can have on the body and gives practical tips on how to mitigate those effects so you can live your life in the most happy, healthy and fulfilling way. Fill your toolbox with tools that you can employ at any time to help bring your mind and your body just a little bit closer to a state of balance while dealing with something as difficult as histiocytosis.
...2021-06-2231 minBeyond the DiagnosisEpisode 004 - EveryLife Foundation, the STAT Act and Rare Disease WeekWelcome to Episode 004 of the Beyond the Diagnosis Podcast. In this episode we talk with Jamie Sullivan and Shannon von Felden from the EveryLife Foundation about the STAT Act, the upcoming Rare Disease Week and the impact that both of these initiatives have had and will have on the rare disease community. We also welcome Deanna Fournier, Executive Director of the Histiocytosis Association as she shares about the Association’s involvement in several of EveryLife Foundation’s working groups.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at k...2021-05-1742 minBeyond the DiagnosisEpisode 003 - The Histiocyte Society – Hope for the FutureWelcome to Episode 003 of the Beyond the Diagnosis Podcast. Have you ever heard of the Histiocyte Society? Are you curious about who they are and what they do? In this episode, we interview Michael Jordan, President of the Histiocyte Society, to learn about the physicians and scientists dedicated to finding better treatments and a cure for histiocytosis and his vision for the future of the Society.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at kw@histio.org.
Take a screenshot and tag us @histiocytosis...2021-04-2726 minBeyond the DiagnosisEpisode 002 - A Glimpse Into the Histiocytosis AssociationWelcome to Episode 002 of the Beyond the Diagnosis Podcast. Have you ever wondered what the staff at the Histiocytosis Association do and what roles they fill? Are you interested in learning more about the future direction of the Association? In this interview with Deanna Fournier, Executive Director of the Histiocytosis Association, we’ll dive into all of that and more!
For more information on Histio Hike Shenandoah, visit www.histiohikeshenandoah.com.
Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at kw@histio.org.
Tak...2021-03-2352 minBeyond the DiagnosisEpisode 001 - Introduction to Beyond the DiagnosisWelcome to the premier episode of the Beyond the Diagnosis podcast where we strive to bring you useful and timely information to inspire and encourage you on your journey with histiocytosis. In this episode, learn a little bit about your host, how the podcast came to be and what you can expect from future episodes.
Let us know what you think! Email Kathy at kw@histio.org or leave a comment.
Take a screenshot and tag us @histiocytosis_association on Instagram.
Music: “Heroes” by Noah Smith2021-03-1808 minBeyond the DiagnosisBeyond the Diagnosis (Trailer)2021-03-1700 min
First Past the PostLangerhans Cell HistiocytosisThis episode covers langerhans cell histiocytosis!2021-02-1100 min
Blonde & BoozieDad Jokes; U.S. Presidents; The Green Monster; Histiocytosis AwarenessTwo guys walked into a bar, the third one ducked. We share some of our favorite "dad" jokes and silly puns! Listen as Katie stumps Sam on this week's segment of Blonde & Brainy! Stay tuned to the second half of the episode when we are joined with a special guest, Reness Kano. Reness shares her story as a mother of a four year old who was diagnosed with Histiocytosis pediatric cancer. The following resources help support pediatric cancer and histiocytosis pediatric cancer. Please consider visiting these websites to help the families and children in need. https://shopmomcology.org/ https://www.c...2020-09-241h 18
Jock Doc PodcastHistiocytosis X/Randy Grundy (feat. Ryan Fuhst)Listen as Dr. London Smith (.com) and his producer Cameron discuss Histiocytosis X with special guest Randy Grundy. Not so boring! https://www.patreon.com/join/jockdocpodcast http://www.londonsmith.com/jockdocpodcast/67-histiocytosis-x-randy-grundy-feat-ryan-fuhst/ Hosts: London Smith, Cameron Clark Guest: Ryan Fuhst. Produced by: Dylan Walker Created by: London Smith2020-09-211h 03Blonde & BoozieIntroducing D.L. Jennings; Our opinions of adulthood and pregnancy; Histiocytosis Awareness MonthWe are joined this week by D.L. Jennings, the successful author of Gift of the Shaper and his newest release, Awaken the Three. Jennings gives us the in’s and out’s of what it takes to become an epic sci-fi author! Listen here for part one of our two-part interview! Don’t forget to check out our featured charity of the month for September, The Histio Cure Foundation. September is Histiocytosis Awareness Month as well as Childhood Cancer Awareness Month. Spread awareness by tagging #iknowhistio on your social media this month and show your support by checking out th...2020-09-021h 14
This Week in Pediatric OncologyTWIPO #43 ~ Langerhans cell histiocytosis : Interview With Carl E. AllenNew York, NY -- In the most recent episode of This Week in Pediatric Oncology (TWiPO), the first podcast focusing on pediatric cancer research, co-hosts Dr. Edwin Horwitz (Nationwide Children’s Hospital), Dr. Nilay Shah (Nationwide Children’s Hospital), Dr. Robyn Dennis (Nationwide Children's Hospital), interview Dr. Carl E. Allen, (Texas Children’s Cancer and Hematology Centers) about his research in a rare pediatric blood disorder known as Langerhans cell histiocytosis (LCH).
Dr. Allen is Assistant Professor, Department of Pediatrics, Section of Hematology-Oncology - Baylor College of Medicine, and the Co-Director of the Histiocytosis and Lymphoma Programs at Texas...2014-10-0136 min
HealthE-BarksGenome Barks Podcast - Malignant Histiocytosis with Dr. Catherine Andre'This week on Genome Barks, we welcome Dr. Catherine Andre’, a CHF-funded researcher and member of the faculty at the University of Rennes in France. Dr. Andre’ has received funding for her work in malignant histiocytosis in the Bernese Mountain Dog. Dr. Andre’ describes malignant histiocytosis, breeds at greater risk for this cancer, treatment possibilities, and also her research into ichthyosis in the Golden Retriever and some of her other projects.
Dr. Catherine Andre’ graduated with a PhD in molecular genetics and oncology at the Paris University in 1992. Since 1995 she has worked at the University of Rennes i...2011-01-2705 min