Life, Death & Happiness

Real stories from real people. This is a Podcast that celebrates life, while also talking about how it is to live with a chronic disease or a terminal illness.

[FA Research Fund @FAresearchfund]

When the Loo family learned their daughter had #fanconianemia, they started to envision what a path forward for their family could look like: https://t.co/nDffymU5yc

[Life, Death & Happiness @LDHPodcast]

It has been a long tine since i send out the last episode. I can now confirm that there will be a second season of Life, Death & Happiness.

We haven’t started recording yes but I just got the first 3 appointment with new guest. Can’t wait to share their stories 😊😊😊

[FA Research Fund @FAresearchfund]

Today part of our team is at @CincyChildrens , meeting with the Fanconi anemia care and research team. We're grateful to have strong partners like the Cincinnati group champion our cause.
#teamwork #fanconianemia

[Life, Death & Happiness @LDHPodcast]

❤️❤️

[FA Research Fund @FAresearchfund]

The Rope Team has been climbing mountains and raising $ for FARF since 2008! #yourropeteam #climbforacure

[FA Research Fund @FAresearchfund]

Read about current research into the FA pathway: https://t.co/gERE4keJRU #FAResearch

[Rare Disease Day @rarediseaseday]

Coming soon - new campaign visuals for Rare Disease Day 2020!

Here's a sneak peek from our recent photo shoot, we're getting ready to show that: Rare is many. Rare is strong. Rare is proud.

#RareDiseaseDay

[Fanconi Hope @fanconihope]

Are you a rare disease patient, healthcare professional or carer of someone with a rare disease? Take part in the CONCORD survey to share your views and experiences of care coordination, at https://t.co/9dVKSvMPkO #CONCORDstudy #CareCoordination

[Life, Death & Happiness @LDHPodcast]

In the newest episode i’m joined by Gina Johnson from the Valleys and Mountaintops Podcast.

You can listen through Apple Podcast:
https://t.co/zlNI4KV3gg

Or through iHeartRadio, Spotify, YouTube & Overcast
#GinaJohnson #ValleysandMountaintop #VasospasticAngina #heartattack

[FA Research Fund @FAresearchfund]

When you give to FARF, you're supporting families like the Bordens. Thank you! https://t.co/lznM156kRH

[Life, Death & Happiness @LDHPodcast]

In the newest episode i’m joined by Gina Johnson from the Valleys and Mountaintops Podcast.

You can listen through Apple Podcast:
https://t.co/zlNI4KV3gg

Or through iHeartRadio, Spotify, YouTube & Overcast
#GinaJohnson #ValleysandMountaintop #VasospasticAngina #heartattack

[FA Research Fund @FAresearchfund]

This week, our Translational Science Director, Sudhir Borgonha, is at the annual policy summit with the American Society for Gene and Cell Therapy. As FA gene therapy trials move forward & FA gene editing projects continue, it's important that FARF has a seat at the table.

[Life, Death & Happiness @LDHPodcast]

We're so proud to announce that we're also to be found through @iHeartRadio now. We already got 14 fantastic episodes up so far, and we can't wait for you all to hear tonights episode either.
go right in and give it a listen; https://t.co/sweubVLOol
#iheartradio

[FA Research Fund @FAresearchfund]

There's been a lot of news about gene therapy lately. Why is gene therapy an approach in FA, how does it work, what do we know now, and where are we headed? Find out in the latest update. #GeneTherapy #ResearchMatters https://t.co/Avvp2GwaZv

[Life, Death & Happiness @LDHPodcast]

Episode 9 is up and this week i sit down with James from ohio and have a talk about his life. We get into deeper thoughts about religion, pets, a positive mindset abd much more. Enjoy:
https://t.co/pfGBWn0hHL

#fanconi #surgery #rarediseases

[FA Research Fund @FAresearchfund]

A Fanconi anemia clinical trial has just received a $1.7 million grant from the FDA. Initial funding for this trial was provided by generous donors to FARF. Thanks to you, those funds have been leveraged to get federal funding for the next four years. https://t.co/Y5hqN6Hezl

[Life, Death & Happiness @LDHPodcast]

Remember him from episode 4? https://t.co/a6Z1qB1Bim

We’re so happy on his behalf ❤️😊

[FA Research Fund @FAresearchfund]

Congratulations to the 2019 recipient of the Amy Winn & Christopher T. Byrd Award for Adults with FA, John Bradford Timperley! Read about Jack & the award ➡️
https://t.co/rPtNwaTnST

[Life, Death & Happiness @LDHPodcast]

Tonights new episode is stearing Erika. Little known fact is that she was the one who talked me into giving it a shot making this podcast, when i myself was in doubt.

You can listen to all episodes through:
https://t.co/w92V4gsNLF
And on Spotify, YouTube, Apple Podcast etc.

[Life, Death & Happiness @LDHPodcast]

Can’t wait to present the next episode to you all! 😊🙌

[FA Research Fund @FAresearchfund]

Congrats to FA researcher @JSurralles on becoming director of the Research Institute of the Santa Creu and Sant Pau Hospital in Barcelona. Thank you for all of your work on #FANCONIANEMIA