Beyond the Diagnosis Histiocytosis Association

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











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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






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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












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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














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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





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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







































































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