ROHHAD News Archives - Page 7 of 11 - ROHHAD Association

5

Delighted to introduce our New Trustee Stephen Whyte

SW2The Team at ROHHAD Association would like to give a huge warm welcome to our new Trustee Stephen Whyte.

Stephen is very passionate about the ROHHAD Association and has been helping the charity consistently from our very first fundraiser almost 2 years ago until now.

Stephen has vast experience in fundraising and has organised events in the past for various charities including our own 3 Peak Challenge Team.  Stephen is a hard working Father and Husband but he always makes the time to help at all of our fundraisers often bringing his family along to help support us too.

His dedication and passion for helping the ROHHAD children has led to the natural progression of being appointed into the role of Trustee.

So welcome aboard Team ROHHAD Association Avengers Stephen ! We thank you for all your hard work so far in volunteering and we look forward to working with you as Trustee.   Here he is at some of our events !

sw3peaks

stephen

Ian and Stephen Snowdon

sw3

5

We had a Jumping Good Time In Edinburgh !!

JGSI

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

webupdate1webupdate2 webupdate3 webupdate4wu1 wu2 wu3 wu4

wu5 wu6 wu7 wu8

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

visit the ROHHAD Association Facebook Page to view the live video

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

This Campaign has ended. No more pledges can be made.