ROHHAD 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!

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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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