FindACure Archives - ROHHAD Association

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/

 

5

We had a Jumping Good Time In Edinburgh !!

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The amazing charity When You Wish Upon A Star went the extra mile to help make Aaron Hunters wish to raise awareness of his rare life threatening disease come true.  We had the most amazing time at their Ceilidh in the Park event, during this years Fringe Festival in Edinburgh.

Our Awesome friend and amazing comedian Dominic Holland led the Record breaking crowd in the  BIGGEST EVER Attempt at  #GOMADJUMPFORROHHAD and it was wonderful to see.

Aaron loved every second of it and despite suffering from anxiety related to his ROHHAD, he managed to appear on stage and watch everyone take part in his challenge.  He is so grateful to all who took part.  Here are some photos of this amazing day and a link to the Live video of the challenge

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https://www.facebook.com/Rohhadassociation/

visit the ROHHAD Association Facebook Page to view the live video

0

Happy New Year 2017 ! Bring on the Fundraising and Awareness !

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HAPPY HAPPY NEW YEAR TO ALL OF OUR AMAZING SUPPORTERS AND AWESOME ROHHAD FAMILIES.

Apologies we have been a little quiet on the website these past few weeks, we were experiencing some server difficulties which look to be fully resolved now !!

What a fabulous year 2016 was for raising awareness and much needed funds to find a cure.  We had such a fun time at all of our events, from the spring ball to our family Halloween night.  Aaron has done a fabulous job of raising awareness with his social media video and some of the other kids have been doing the same, with families speaking to the press around the world and the kids doing what they can to raise funds and awareness.  THANK YOU to every single person who helped last year, we are deeply grateful for all of the support.

We still have such a long way to go but all of us at the charity are excited for 2017, we are hoping that this will be the year that we raise enough funds for research in the UK to begin ! as well as National and Global awareness ! Also hoping to do some more blogging about the children this affects so that our supporters can gain some insight into ROHHAD and who they are helping.

We have so many exciting things planned and will be posting details of those soon and in the coming months so please keep following our website posts and social media pages @ROHHAD_GLOBAL on twitter and ROHHAD Association on Facebook.

In the meantime Aaron still has ongoing his social media campaign #GOMADJUMPFORROHHAD !!  Our charity Ambassador Emily Middlemas recently completed her challenge and we cant wait to see more people getting involved including the X Factor Finalists.

If you have not done the challenge yet please see our homepage for how too ! and please Get Your Wellies On !!

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Dates of our events just now are;

Saturday the 1st of April 2017 – Masquerade Spring Ball

Sunday the 30th of April – Glasgow Kiltwalk

Saturday the 6th of May – Intu Braehead Shopping Centre, fun day

4th of June – Aberdeen Kiltwalk

Saturday 29th July –  Family Summer Fun Day

20th of August – Dundee Kiltwalk

Saturday 2nd September – Psychic Night

17th September – Edinburgh Kiltwalk

Saturday 28th of October – Family Halloween Disco

we are also hoping to have some bag packing, christmas street collections and possibly a christmas fayre.

(all information including venues, times and fun planned will be available by the end of January on our website)

 

 

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