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 [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

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Resources mentioned in the podcast:

· For more information and to apply to the Histio Scholarship Program: https://histio.org/resource-overview/scholarship-program/

· Email questions about the Scholarship Program to: [email protected]

· To make a donation specifically to the scholarship fund: https://histio.org/scholarship-donations/

Music: “Heroes” by Noah Smith

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 you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.

Resources mentioned in the podcast:

Histio Hike Shenandoah Website: www.histiohike.com

If you’d like to get more information about planning your own fundraising event, reach out to [email protected]to get started.

Music: “Heroes” by Noah Smith

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 or share an idea for a future podcast with us at [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.

Resources mentioned in the podcast:

HA Rare Disease Day Info: https://histio.org/get-involved/raise-awareness/

NORD Virtual Event: https://rarediseases.org/rare-disease-day/rare-disease-day-register/

Share Your Story: https://rarediseases.org/rare-disease-day/rare-disease-day-share-your-story/

Light Up for Rare: https://rarediseases.org/how-to-light-up-for-rare-rare-disease-day-2022/

General Resources: https://rarediseases.org/rare-disease-day/resources/

EURORDIS: https://www.eurordis.org/

Music: “Heroes” by Noah Smith

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 us a review, drop us a comment or share an idea for a future podcast with us at [email protected].

Resources mentioned in the podcast:

· https://www.nacho-consortium.org/

· https://www.stjude.org/directory/c/sara-grace-clyburn.html

· https://www.clinicaltrials.gov

· https://www.histiocytesociety.org

· https://www.erdheim-chester.org

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 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 [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

Resources mentioned in the podcast:

Music: “Heroes” by Noah Smith

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 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 [email protected].

If you liked this episode, please consider leaving a review, sharing with a friend, leaving us a comment or taking a screenshot of the episode and tagging us on Instagram at histiocytosis_association. We’d love to hear your feedback!

Links and Resources:

Music: “Heroes” by Noah Smith

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, drop us a comment or email Kathy directly at [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

Have an idea for a podcast episode?  Email us at [email protected] and let us know what it is!  We want to hear from you!

www.histio.org/research

Music: “Heroes” by Noah Smith

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 [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

www.rarediseases.org

https://erdheim-chester.org/

https://histiocytosis.ca/

https://histio.org/get-involved/raise-awareness/

Music: “Heroes” by Noah Smith

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 [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

If you or someone you know is experiencing bullying, you can find information and resources at www.stopbullying.gov.

Additional Resources:

· https://www.nami.org/Home

· https://www.mentalhealth.gov/

· https://suicidepreventionlifeline.org/

Music: “Heroes” by Noah Smith

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 mind and your body just a little bit closer to a state of balance while dealing with something as difficult as histiocytosis.

Let us know what you think! Leave us a review, drop us a comment or email Kathy directly at [email protected].

Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!

www.trueandlastingwellness.com

Music: “Heroes” by Noah Smith