Beyond the Diagnosis: Recent Episodes
Histiocytosis Association
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.
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 histiojourney. To learn more visit https://podcasters.spotify.com/pod/show/histio/support
Resources mentioned in the podcast:
- App for tracking fluids: IUFLOW
- UK PituitaryFoundation
- 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/@HistiocytosisMusic: “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 theincredible contributions of our devoted volunteers and Ambassadors. Tune in as we sit down with two of our Ambassadors who generously share their volunteerjourney 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 histiojourney. 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 (FormerlyBe the Match): https://bethematch.org/
- Brand New Histiocytosis Association YouthAmbassador Program: https://histio.org/histio-ambassadors/ or email Melinda at matnip@histio.org
- Follow the Histiocytosis Association on socialmedia:
§ 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 sureto 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 – TheFoundation 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 socialmedia:
§ Facebook: https://www.facebook.com/histio
§ Twitter/X: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube: https://www.youtube.com/@HistiocytosisMusic: “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 socialmedia:
- § 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. Filledwith 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 ofFunding: 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 socialmedia:
§ 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 PodcastersMusic: “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 recentGlobal Genes conference and how their mutual goal is to show up, share their voice and make an impact.
AdditionalShow 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 histiojourneys. 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 socialmedia:
§ 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 HistiocytosisAwareness 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 TheMountain 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 screenshotand 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
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
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.
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
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
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
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
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
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
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 socialmedia:
- Facebook: https://www.facebook.com/histio
- Twitter: @histiocytosis
- Instagram: histiocytosis_association
- YouTube: https://www.youtube.com/histiocytosisassoc
Music: “Heroes” by Noah Smith
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
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
March 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-Minute Thursday touched you! Reach out to podcast@histio.org and tell us your thoughts.
Music: Walk Together by Olexy
Welcome 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 sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.
Resources mentioned in the podcast:
- To learn more about the projects that received grant funding in our 2022 cycle visit https://histio.org/research/grants-awarded/
- To get more information or begin the process of planning your own fundraiser, reach out to Allie at allegramcfadden@histio.org
- Histiocytosis Association Rare Disease Day $2800 by February 28thFundraiser: https://histio.donordrive.com/event/rarediseaseday
- ECD Patient and Family Gathering: www.erdheim-chester.org or contact ECDGA Patient Navigator, Belinda Cobb at 337-401-7657
- For more information about Histio Hike Shenandoah: https://histio.donordrive.com/event/histiohikeshenandoah
- 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 “Ambient Inspiration” Music by The Mountain from Pixabay
Music: “Heroes” by Noah Smith
Welcome 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 notified the moment a new episode of Beyond the Diagnosis is released.
Resources mentioned in the podcast:
- HLH Patient Registry Talk – Gaps in Current Understanding of HLH: For more information, visit https://hlhregistry.org/. Or join a session: Thursday, January 31 @11am Eastern Time or Thursday, February 9 @6pm Eastern Time. Email info@histio.orgto get the links to register
- Histiocytic Disorders Survivor Study information: Call 866-438-1640 or email histio@uabmc.edu
- Learn all about the Histiocyte Society here: https://histiocytesociety.org
- Find more information about the Histiocyte Society here: https://histiocytesociety.org/Committees
- 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 AudioCoffeefrom Pixabay
- o “Ambient Inspiration” Music by The Mountain from Pixabay
Music: “Heroes” by Noah Smith
Welcome 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 notified the moment a new episode of Beyond the Diagnosis is released.
Resources mentioned in the podcast:
- January 8, 2023 Philadelphia Flyers Game benefiting the Histiocytosis Association: www.fevo.me/histio23
- Learn more about Give an Hour here: https://giveanhour.org and register for upcoming sessions here: https://cosdncfi.paperform.co/
- 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/
- Listen to our episode with updates on research from former grant recipients: https://spotifyanchor-web.app.link/e/mdPxHOokYvb
- See the full video with Astrid van Halteren and 8 Years of International Collaboration from Seed Funding here: https://histio.org/8-years-of-international-collaboration-from-seed-funding/
- Living with Rare Cancer Survivorship Presentation:https://cancercontrol.cancer.gov/ocs/about/events/living-with-rare-cancer
- To participate in the survivorship study, email histio@uabmc.edu
- Get more information about the Histio Scholarship Program here: https://histio.org/resource-overview/scholarship-program/
- 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
Commercial music by SoundGalleryBy and The Mountain from Pixabay
Welcome 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 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:
· Histiocytosis Hellas Website: www.histioartemis.org
· OR Associacion Website: http://www.orasociacion.org/
· Histio caregiver workshops:
- Caregiver Workshop:
- 11/21 7:00-8:30pm (EST) - register here
- 12/3 11:00-12:30pm (EST) - register here
- 12/15 3:00-4:30pm (EST) - register here
- Peer Support Calls:
- November Sessions
- HLH: 11/22 5:00-6:00pm (EST) - register here
- LCH: 11/29 5:00-6:00pm (EST) - register here
- December Sessions
- All are welcome: 11/13 7:00-8:00pm EST - register here
- All are welcome: 11/22 3:00-4:00pm EST - register here
- November Sessions
· For more information about the November 29 Hopecast, follow us on social media or reach out to info@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/histiocytosisassoc
Music: “Heroes” by Noah Smith
Welcome 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 patients; there will also be a continued medical education opportunity for medical professionals, and talks on clinical trial and registry opportunities, emotional/mental wellness, transitioning care and finding a specialist, and networking opportunities both with histio experts as well as other patients and families. Can't join us in person? You can tune in virtually as well and will be able to engage with us in the discussion! Registration is required; visit www.histio.org/nationalconference to learn more and save your seat. See you there!
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:
- Histioctye Society Website: www.histiocytesociety.org
- Follow the Histiocyte Society on Twitter!: @HistiocyteSoc
- Practice Point: www.practicepointcme.com
In memory of Dr. Robert Arceci: 1950-2015
Music: “Heroes” by Noah Smith
Welcome 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 you can be notified the moment a new episode of Beyond the Diagnosis is released.
Resources mentioned in the podcast:
- www.histio.org/research
- Dr. Abagnale’s Research Project: https://histio.org/grants/modeling-langerhans-cell-histiocytosis-with-patient-derived-ipscs/
- Dr. Chandra’s Research Project: https://histio.org/grants/identifying-novel-csf-biomarkers-for-the-diagnosis-of-isolated-cns-hemophagocytic-lymphohistiocytosis/
- Dr. Sepulveda’s Research Project:https://histio.org/grants/role-of-the-immune-checkpoint-tim-3-in-the-pathogenesis-of-non-classical-hlh/
www.histio.org/get-involved/fundraising-events
Welcome 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 episode of Beyond the Diagnosis is released. Resources mentioned in the podcast:
Resources mentioned in the podcast:
-
National Organization for Rare Disorders (NORD): www.rarediseases.org
-
Histiocytosis Association Awareness Info: https://histio.org/get-involved/raise-awareness/
-
Histiocytosis Association Fundraising/Awareness Events Info: https://histio.org/get-involved/fundraising-events/
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Hashtags to use for the Bridge to a Cure runs: #histioblueribbonrun #histiorunchallenge #histiocytosisawareness #iknowhistio
Music: “Heroes” by Noah Smith
Welcome 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!
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:
-
Cancer and Careers website: www.cancerandcareers.org
-
Balancing Work and Caregiving webinar: https://www.cancerandcareers.org/en/community/events/webinar-caregivers
-
For an appointment to speak with a career councilor email cancerandcareers@cew.org
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To get your copy of the Living and Working with Cancer Workbook: https://www.cancerandcareers.org/publication_orders/new
-
Workplace Transitions: https://www.workplacetransitions.org/
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For more information about the HLH Awareness Charity Golf Outing, email robin@histio.org
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To access the Histiocytosis Association Online Yoga Studio: https://histio.org/resource-overview/yoga-for-histio/
Music: “Heroes” by Noah Smith
Welcome 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 @histiocytosis_association on Instagram. We’d love to hear your feedback!
Resources mentioned in the podcast:
· Fundraising Events: https://histio.org/get-involved/fundraising-events/
· International Family Group Organizations: https://histio.org/resources_categories/international-histio-organization/
· HA Resource Overview: https://histio.org/resource-overview/
· HA Education and Connection: https://histio.org/resource-overview/education-connection/
· HA Scholarship Program: https://histio.org/resource-overview/scholarship-program/
Welcome 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 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 Resources: www.griefresourcenetwork.com
- Histio Physicians Directory: https://histio.org/resource-overview/histio-physician-directory/
Music: “Heroes” by Noah Smith
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, 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:
- 1987 Family Circle Article: https://histio.org/about/organizational-history/
- For information on open clinical trials: www.clinicaltrials.gov
- Histiocyte Society: www.histiocytesociety.org
- Histio Physicians Directory: https://histio.org/resource-overview/histio-physician-directory/
- Yoga for Histio Classes: https://histio.org/resource-overview/yoga-for-histio/
Music: “Heroes” by Noah Smith
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 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:
- Histio Ambassador Program: https://histio.org/ambassador-volunteer-program/
- Histio Ambassador Profile: https://histio.org/wp-content/uploads/2022/02/Final-Draft_-Histio-Ambassador-Profile.pdf
If you’d like to get more information about the Ambassador Program, reach out to outreach@histio.org.
We would like to recognize and thank Investor’s Bank Foundation for providing the sponsorship necessary to make the Ambassador Program possible.
Investor’s Bank Foundation: https://www.investorsbank.com/about-us/community/investors-foundation
Music: “Heroes” by Noah Smith
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 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:
Erdheim-Chester Disease Global Alliance: https://erdheim-chester.org
ECD Care Centers: https://erdheim-chester.org/care-centers/
Histiocytosis Association Physician’s Directory: https://histio.org/resource-overview/histio-physician-directory/
Music: “Heroes” by Noah Smith
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 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 more information and to apply to the Histio Scholarship Program: https://histio.org/resource-overview/scholarship-program/
· Email questions about the Scholarship Program to: scholarships@histio.org
· 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 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:
Histio Hike Shenandoah Website: www.histiohike.com
Histio Scholarship Program: https://histio.org/resource-overview/scholarship-program/
If you’d like to get more information about planning your own fundraising event, reach out to events@histio.orgto 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 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:
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 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:
· 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 podcast@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
Resources mentioned in the podcast:
- https://www.pcori.org/
- Educational Webinars: https://histio.org/resource-overview/education-connection/
- Information on NCCN Guidelines: https://histio.org/histiocytic-disorders/
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 podcast@histio.org.
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:
- https://www.nih.gov/health-information/emotional-wellness-toolkit
- https://nationaltoday.com/emotional-wellness-month/#why-we-love
- https://news.harvard.edu/gazette/story/2011/01/eight-weeks-to-a-better-brain/
- https://beckafloyoga.com/
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 kw@histio.org.
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 info@histio.org and let us know what it is! We want to hear from you!
www.histio.org/research
www.clinicaltrials.gov
www.stjude.org
www.histio.org/research/clinical-trials
www.histio.org/get-involved/fundraising-events
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 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/
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 kw@histio.org.
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 kw@histio.org.
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
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 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 kw@histio.org.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
www.everylifefoundation.org
www.statact.org
www.rareadvocates.org/rdw
Music: “Heroes” by Noah Smith
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.
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!
Music: “Heroes” by Noah Smith
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 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.
Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!
Music: “Heroes” by Noah Smith
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.
Take a screenshot and tag us @histiocytosis_association on Instagram.
Music: “Heroes” by Noah Smith