ROHHAD Research

14

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/

 

4

Hollywood Charity Ball

 

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.

Your Entertainment for the night Includes performances from some of Scotland's Finest Musicians, Comedians and Actors.

You will see performances from

Ridiculously Funny; Award Winning Scottish Comedian 

Mr Chris Henry 

Stunning Musician and Our Charities Young Ambassador the Very Beautiful


Miss Emily Middlemas 

Fabulously Talented Actor and Awesome Musician 

Mr Scott Peden 

Our Charity Presentation will be delivered to you by our Awesome Charity Ambassador and Super Talented Actor

Mr Lee Samuel

Our grand Auction has Lucrative Prizes to be won by the highest bidder!  We also have so many Fantastic Prizes to give away through our Wheel Of Fortune and other Fundraisers throughout the night....... and more so much more! Did we mention the side splitting laughing and dancing ? Your Night will continue in the wee small hours or even early morning with Amazing entertainment and music from the fabulous Stephen Dunn of Gracious Party's.... and more so much more!

To join us at the Ball please contact us at the charity office on 01389 753900 or email us at [email protected] 

Tickets Cost £120.00 with a table of 10 Discounted to £1000.00

Your Ticket price Includes, Champagne Reception, 3 Course Meal with Drink, All Entertainment, Free Bet for the Casino, Late Night Supper and a Night You Will enjoy so much that you will not want it to end!!

We only have 18 tables available so hurry and reserve yours now...

This is One Night you will want to tell your friends.... I was there!

We would like to say a special To all of our Performers who are donating their talents free of charge  and to our Awesome Sponsors who have donated materials, their time and talent to ensure that all proceeds will go towards finding a cure for the ROHHAD Children.  

Gracious Party's, TCB Photography, All Dressed Up, Alea Casino and JJR Print Ltd  Your all Incredible !.

 

 

 

4

Edinburgh Fringe Festival Mass GOMADJUMPFORROHHAD challenge

JGSI

The amazing charity When You Wish Upon A Star is going the extra mile to help make Aaron Hunters wish to raise awareness of his rare life threatening disease come true.  They are hosting an incredible event during this years Fringe Festival in Edinburgh and they and we are inviting you along to take part !! If Your Free PLEASE Come along and join us in our BIGGEST EVER Attempt at  #GOMADJUMPFORROHHAD 

On the 13th August 2017 between 11am-2pm When You Wish Upon A Star have organised an event which is “Ceilidh in the Park for Wishes”  when they will be holding an open air Ceilidh with a 10 piece Ceilidh band and DJ.   At the Ceilidh their intention is try and break the World Record for the biggest Gay Gordons dance. This will be in West Princess Street Gardens, Ross Bandstand, Edinburgh.

Towards the end of the Ceilidh between 1.45pm-2pm they are planning  to ask everyone taking part at the event (and anybody else who may be watching on the side lines), if they would like to join in and help them to grant the part of Aaron’s Wish which is raising the awareness for ROHHAD and for them to take on his challenge #GOMADJUMPFORROHHAD at the event.

They are arranging for a paddling pool with water in it on the Ross Bandstand Stage and the Incredible Comedian Dominic Holland will Jump in the paddling pool and lead the crowd for at least 1 full minute which Aaron’s Challenge requests.  Dominic has been an amazing support to Aaron's Challenge so far and he cannot wait to take part himself.  He is hoping everyone who is there will join him !!

We too are hoping that everyone in the audience will jump along with Dominic at the same time and perhaps create the largest crowd to do the #GOMADJUMPFORROHHAD challenge yet !!  

You will be in good company if you decide to come along and join in at this massive attempt at Aaron’s social media challenge, as we are hoping that Robert Downey Jr and his fellow AVENGERS will have completed their challenge that they promised Aaron they would do.  Not only that but thousands of other people around the world have attempted the challenge and had a lot of fun in the process all whilst helping Aaron raise global awareness and funds to find a cure.

Hope to See You There !!

To participate in the Ceilidh and World Record attempt for the charity When You Wish Upon A Star you can sign up using these links - 

Charity Website: http://www.whenyouwishuponastar.org.uk/forthcoming-events-scotland.html?detail=238&r=0

Edinburgh Festival: https://tickets.edfringe.com/whats-on/ceilidh-in-the-park-1

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