ROHHAD News Archives - ROHHAD Association

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ROHHAD Association Research Grants 2019 to 2020



We are delighted to officially announce that the ROHHAD Association is now OPEN to proposals for funding for Medical Research into ROHHAD Syndrome.

The available funding for 2019/2020 research grants is a staggering £275,000.00 which would not have been possible without the help of all of our incredible supporters, our inspiring children their families and their friends. Each and everyone of you have contributed and we couldn’t have done it without you.

We want to say a MASSIVE THANK YOU to you all and also to our charities special friend Robert Downey Jr and all of his amazing fans the ducklings whom helped us immensely with raising awareness, funds and the #GoMadForROHHAD campaign. Fulfilling Aaron Hunters Wish to help raise awareness and funds to #FindACure for his friends all around the world battling the Evil ROHHAD

Applications for funding closes on the 1st of February 2019 and we hope to be supporting ROHHAD Research Financially by April 2019. We will keep you all updated on the progress of ROHHAD Research as this moves forward.

Please click the link to view our charities Research Strategy and also the criteria for this coming years funding proposals. The Strategy and ROHHAD Research Priorities were created in consultation with the families affected by ROHHAD Syndrome.

ROHHAD Association Research Strategy

We hope that we can rely on your support now and in the future to ensure that one day we do indeed Find A Cure!

First Edition of the ROHHAD Reader

The ROHHAD Reader was written and published by Casey Rand, Emma Dunne and their colleagues in clinical research at the Center for Autonomic Medicine in Pediatrics (CAMP) Ann & Robert H. Lurie Children’s Hospital of Chicago and we want to say a special thank you to them for taking the time and putting so much effort into this first edition(yes more will follow!)

They could not have put this together without the help of all 3 rohhad charities, ROHHAD Fight Inc, ROHHAD Association Belgium and our own ROHHAD Association.

However it is our awesome families who shared their photographs and experience with ROHHAD that has made this issue very special and an incredible read so an extra special thank you to all of you who got involved.

We hope you enjoy it as much as we have here at the charity.

One last Huge thanks to all of the doctors, junior doctors and scientists that are involved in ROHHAD Research already and whom are keen to carry on researching and help us to understand this disease better hopefully one day leading to a cure. The ROHHAD Reader introduces you to the teams who are doing research currently and who will be doing more as time goes on.

As you will see we have doctors in various places across the world who are working hard to try and help our children.

As a charity and as families affected hopefully we can all continue to work hard together to raise funds and awareness of ROHHAD so that we can help fund this vital research. If you would like to help please visit our donation page or get in touch to find out more about support you can give.

Click here to read the Rohhad Reader

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Robert Downey Jr has Gone Mad For ROHHAD !! Aarons Wish is unfolding !

https://www.facebook.com/robertdowneyjr/videos/858723674296099/?t=10

Wooohoo  the real IronMan has done Aaron’s Challenge and he is calling on all Marvel FANS, the Avengers and fellow Marvel Universe Heroes to do the muddy puddle challenge too 

Aaron would like to say –

“This has been the best time of my whole life ever and I am so excited to see everyone having fun and helping my special friends by doing my muddy puddle #GOMADJUMPFORROHHAD challenge. THANK YOU everyone who helps us. I love you so so much IronMan, your my best friend and I always knew you would want to help us love Aaron”

This was by far the most magical moment of Aarons Life ! and his thoughts on the challenge “It was Awesome!” Aarons weekend with his Favourite Hero finished in style with his wish being fulfilled as he watched Robert get wet and muddy to help all of the ROHHAD children ! Aarons Heart is so full of HOPE right now for all of his special friends ! The Mission is to defeat the Evil ROHHAD and He cannot wait to see you all Go Mad and Jump For ROHHAD

To all who HELP by donating & taking part in the challenge we say a MASSIVE THANK YOU it is with your help we’re gonna find a cure !

Robert and Susan Downey Random Act Funding charity are this year supporting the ROHHAD Association charity. They are running an incredible competition and you can get involved, donate and enter via www.crowdrise.com/RDJ .  If you donate $10 you will be entered into the prize draw to win 2 VIP Tickets to the premiere of   #InfinityWar and hang out at the after party !!

Special Thanks to Robert Downey Jr, Susan Downey and #TeamDowneyfor their Incredible support. The HOPE that all of the families affected by ROHHAD now have would not be happening without YOU!

To everyone who helped Aaron reach his beloved,  IronMan! from the ducklings to family friends and when you wish upon a star (who grant terminal wishes) We thank you so Much ! (you all know who you are)

 

Hello all, with our selfie game on point, Aaron and I are devising ways we can #gomadforrohhad…Donate just $10 bux…

Posted by Robert Downey Jr on Saturday, 24 March 2018

 

https://www.facebook.com/robertdowneyjr/videos/854392214729245/

 

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