Our Blog

First Edition of the ROHHAD Reader

This was written and published by the 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 couldn’t have put it 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 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

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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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Exciting Times Ahead – Check Out Our Amazing Fundraising Events for 2018

Please check our event’s page out for all details of our current and up to date events as well as planned fundraising activities.   This year we have

ZERO TO HERO – global virtual sporting event during May 2018

What is the ZERO TO HERO Challenge 

The ZERO TO HERO Challenge allows you to complete your chosen distance by doing a sporting activity(s) of your choice. You complete the challenge during superhero month and become a ROHHAD Avenger!

This challenge is inclusive of all ages and abilities worldwide and regardless of whether you are a trained athlete or have limited mobility, this is the sporting charity event for YOU!

 Annual Hollywood Charity Ball in Alea Casino –  2nd June 2018

Join us for a spectacular evening hosted by the amazing comedy duo Jane McCarry and Mark Cox; as you party the night away like they do in HOLLYWOOD! 

Our Annual Charity Ball will be held in the stunning Ballroom at the Alea Casino in Glasgow on Saturday the 2nd of June 2018.

Your evening will begin with a walk down our red carpet and you will be greeted by our stunning showgirls and shown to the champagne reception, setting the tone for the fabulous evening that we have planned for you.

With delicious food freshly prepared for you; an evening of Incredible entertainment, Live Music, Comedy, Grand Auction, Incredible Prizes to be Won, fundraising, Fun, Dancing, Laughter and so much more will unfold.  Thanks to the award winning photographers at TCB Photography you can be photographed like the A Lister you come dressed as ! with our dress code being Glitz and Glam we know that is one Picture you will treasure.

With Hosts Jane and Mark or should we say Still Games Tam and Isa! Hosting the evening we know you will enjoy every second and you won’t want it to end.

New – Golf Charity Benefit at Cowglen Golf Club – 31st August 2018

More details about this incredible Golf fundraiser we are planning for you will follow soon ! If Golf is your passion email the charity today and will be in touch soon.  We can tell you that this is a team event and there will be lots of incredible prizes to be won on the day.  The course is the stunning Cowglen Golf Club in Glasgow.

Murder Mystery Night – Autumn (date and venue tbc)

Being organised by our Awesome Charity Ambassador Actor Lee Samuel.  We will be sharing details of this evening of mystery with you all very soon….. watch this space and if you think this is a night you would enjoy please email us and we will forward the details to you when we announce them !

Annual Psychic Night – Summer 2018 (Date tbc Denny Civic Theatre)

We are busy organising our annual psychic night and we hope to share details with you all very soon.  This is always a popular event so keep watching our facebook and twitter pages for details and tickets all coming soon.

Annual Halloween Family Fun Night (Date and venue tbc)

We are busy organising our annual family halloween night and we hope to share details with you all very soon.  This is always a popular event so keep watching our facebook and twitter pages for details and tickets all coming soon.

Keep following us on twitter @ROHHAD_GLOBAL and facebook @RohhadAssociation for all details on our upcoming events as we share them.  If you want to get involved and help or would like to attend any event mentioned above you can contact us at the charity via email rohhadassociation@gmail.com

 

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