Jeune Syndrome Fnd'n

The Jeune Syndrome Foundation | Set up by a Jeunes Family for Jeunes Families.

[Jeune Syndrome Fnd'n @JeuneSynFound]

Want to know what the Foundation has been up to this year? Why not take a look at our yearly Trustee's Report

[Jeune Syndrome Fnd'n @JeuneSynFound]

On July 5th it was the NHS’s 71st birthday and we’d love to know your experience with this huge institution.

Does the NHS support you? Does it give you access to the services you need? What would make it better?

Don’t forget to comment below!

[Jeune Syndrome Fnd'n @JeuneSynFound]

None of us want to perform CPR on our little ones but it’s vital and life saving that everyone knows how to perform the basics

Take a look at this excellent video to explain how to do it

https://t.co/yZ4GR7AkAL

Don’t forget to comment back to let us know if you’ve watched!

[Jeune Syndrome Fnd'n @JeuneSynFound]

So us folks at the foundation would like to once again thank the newly married Mr and Mr Merchent-Hall for their generous donation of their wedding present fund to us! The final total is an amazing £861.00. I’m sure you’ll all join us in wishing them a happy future together

[Jeune Syndrome Fnd'n @JeuneSynFound]

Written by Valerie Kiln-Barfoot
Dear Jeune syndrome

I don’t know whether you realise but yesterday I turned 30. That’s right 30 years I have been living alongside you and trying to stay afloat from all the... https://t.co/ZpgBMawTJ4

[Jeune Syndrome Fnd'n @JeuneSynFound]

The Foundation Need You!!

We are looking for someone with experience in the production and post production of short 2-3minute youtube videos.

This will include hands on filming and use of green screen,... https://t.co/PFfz9HYTFF

[Jeune Syndrome Fnd'n @JeuneSynFound]

Here at the Foundation we’d like to celebrate International Women’s Day. We have several amazing women and mothers who both help run our charity and look after all us Jeune individuals. Why not let us know which Jeune women you’ll be celebrating and thinking about today?

[Jeune Syndrome Fnd'n @JeuneSynFound]

As part of Rare Disease Day 2019 and alongside other rare disease patient organisations, the Foundation signed an open letter to the UK government urging them to review and refresh the Rare Disease... https://t.co/hGLmGD5WRH

[Jeune Syndrome Fnd'n @JeuneSynFound]

What do you all think of this description of us??

https://t.co/Fm22SIXQAb https://t.co/Fm22SIXQAb

[Jeune Syndrome Fnd'n @JeuneSynFound]

Happy Valentines Day everyone from all of us at the foundation - do you love someone with Jeune’s? If so why not share a photo of your loved one with us!

[Jeune Syndrome Fnd'n @JeuneSynFound]

Happy new year from everyone here at the foundation!

What would you wish for for the Jeune community in 2019?

[Jeune Syndrome Fnd'n @JeuneSynFound]

Merry Christmas everyone from us all here at the foundation!

[Jeune Syndrome Fnd'n @JeuneSynFound]

Valerie Kiln-Barfoot. Cyril says https://t.co/fVIaFmE8oG

[Jeune Syndrome Fnd'n @JeuneSynFound]

So pleased so be part of this wonderful magazine! https://t.co/arPYoJb5UW

[RARE Revolution Magazine® @RareRevolutionM]

Meet our newest #RareRevolutionaries - #RareRevMembersMonth - @aPODDfoundation @PBCFoundation @JeuneSynFound @CharityDEBRA - Find out more about how your charity can join the #RareRevolution here https://t.co/od0FOdZizM

[Jeune Syndrome Fnd'n @JeuneSynFound]

@RareRevolutionM Thanks @RareRevolutionM so happy to join the family and work with you all next year!

[Jeune Syndrome Fnd'n @JeuneSynFound]

Thank you Rare Revolution Magazine for the great mention on their December advent calendar. Excited to join the family and work with you all next year!

https://t.co/nmziD2vYDB https://t.co/nmziD2vYDB

[RARE Revolution Magazine® @RareRevolutionM]

@JeuneSynFound are one of our newest members #RareRevMembersMonth educating and supporting those with Jeune Syndrom Learn more here https://t.co/bOpKa76bjO

[Jeune Syndrome Fnd'n @JeuneSynFound]

Hi all,
Just to let you know Valerie had her operation yesterday and hopefully she will be feeling better soon. She’ll be out of action for a little while as can’t use right hand/arm at present and is in a lot of pain.
Take care of yourselves. Linda

[Jeune Syndrome Fnd'n @JeuneSynFound]

Hi, just to let you all know Valerie Kiln-Barfoot is in hospital quite poorly with an infection in her right arm. She’s due to have a operation this afternoon.
So she will be out of action for a few days.
I will update you all when I can.