Histiocytosis Association

Beyond the Diagnosis

Health EN ↓ 93 episodes

The Beyond the Diagnosis podcast was created by the Histiocytosis Association to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help them on their histio journey. The podcast provides an additional platform by which listeners can consume information while on the go or if unable to remain in front of a computer for an extended period of time.

Author

Histiocytosis Association

Episodes

Episode 017 - History Firsthand - An Account of the Origins of the Histiocytosis Association w/ Jeff Toughill 25.05.2022 43:07

Welcome 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, d...

Episode 016 - Introducing the Histiocytosis Association's Ambassador Program 27.04.2022 53:56

Welcome 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 comme...

Episode 015 - Erdheim-Chester Disease – Information, Resources and Hope from the Experts 23.03.2022 50:02

Welcome 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 s...

Episode 014 - The Histiocytosis Association Scholarship Program 09.03.2022 20:11

Welcome 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...

Episode 013 - Hiking Our Way to a Cure 23.02.2022 44:28

Welcome 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...

Episode 012 - Rare Disease Day 2022 25.01.2022 30:00

Welcome 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...

Episode 011 - A Look into the North American Consortium for Histiocytosis 21.12.2021 47:06

Welcome 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...

Episode 010 - A Year End Update from the Histiocytosis Association 23.11.2021 39:14

Welcome 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 y...

Episode 009 - Emotional Wellness Month and the Benefits of Yoga 26.10.2021 32:41

Welcome 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 advantag...

Episode 008 - The Ins and Outs of Clinical Trials and Our Research Grant Program 22.09.2021 40:39

Welcome 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, dr...

Episode 007 - Why Raising Awareness is Critical and the Impact it Can Have 24.08.2021 47:47

Welcome 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 ....

Episode 006 - LCH to Bullying, How One Patient is Using Her Experiences to Make a Difference 27.07.2021 40:07

Welcome 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 k...

Episode 005 - Managing Stress in Difficult Times 22.06.2021 31:56

Welcome 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...

Episode 004 - EveryLife Foundation, the STAT Act and Rare Disease Week 17.05.2021 42:51

Welcome 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...

Episode 003 - The Histiocyte Society – Hope for the Future 27.04.2021 26:27

Welcome 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...

Episode 002 - A Glimpse Into the Histiocytosis Association 23.03.2021 52:08

Welcome 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 Hi...

Episode 001 - Introduction to Beyond the Diagnosis 18.03.2021 8:47

Welcome 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....

Beyond the Diagnosis (Trailer) 17.03.2021 0:21