Beyond the Diagnosis

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 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.  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 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 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 histio@uabmc.edu 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 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.  Resources mentioned in the podcast: Survivorship Study: https://histio.org/uab-survivorship-study-and-its-impact-so-far/ Email histio@uabmc.edu  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 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 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 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.    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 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.    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 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.    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  --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 jane@foothillsdisability.com  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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 matnip@histio.org 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 matnip@histio.org  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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 matnip@histio.org 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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.   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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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: Heroes by Noah Smith --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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_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 histio@uabmc.edu 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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_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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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.   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 histio@uabmc.edu 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org and tell us your thoughts.  Music: Walk Together by Olexy  --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org and tell us your thoughts.  Music: Walk Together by Olexy  --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 timely information for your histio journey, please visit https://podcasters.spotify.com/pod/show/histio/support Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Grief Support Group: 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/histiocytosisassoc Commercial Music Forest Lullaby by Lesfm from Pixabay Music: “Heroes” by Noah Smith --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 if a 3-Minute Thursday touched you!  Reach out to podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

May 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 here: https://histio.org/histio-ambassadors/ 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 @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. The Histiocytosis Association has several support groups, including for patients, caregivers, a focus on managing grief, and breakout rooms by histiocytic disorder on the open calls! Join the group(s) that feel most beneficial for you. Learn more and sign up, here: http://histio.org/peer-chats   Resources mentioned in the podcast: To view the full text of the study: https://clinicaltrials.gov/ct2/show/NCT03990428 Registry for patients with Erdheim-Chester Disease and other histiocytoses: https://clinicaltrials.gov/ct2/show/NCT03329274   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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

March 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. Referenced in this episode: Self-Care Is Not Selfish — ANGEL AID (angelaidcares.org) 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

March 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. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

Welcome 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 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: For all of the episodes mentioned in today's podcast visit: https://spotifyanchor-web.app.link/e/8XgqvENnmyb Or on the Association's webpage at https://histio.org/beyond-the-diagnosis-podcast/    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 --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

March 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-Minute Thursday touched you! Reach out to podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support

March 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 if a 3-Minute Thursday touched you! Reach out to podcast@histio.org and tell us your thoughts. Music: Walk Together by Olexy --- Support this podcast: https://podcasters.spotify.com/pod/show/histio/support