Archive for July, 2017

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 13^th 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

The ROHHAD Association is a charity that has been set up to help raise awareness and funds to find a cure for the rare life threatening and terminal disease ROHHAD that affects less than 100 children worldwide.

As our charity grows we are now badly in need of our own office and storage space. We currently run office duties from the Hunter Family Home however recently we have outgrown this and in order for our charity to move forward and continue to grow; it really needs its own office.

The Hunter family have now donated a garage building on their land that we can renovate and transform into the ROHHAD Association Head Office. The electricity costs of running the office building will be donated to the charity by the Hunter Family for a minimum of 3 years. Therefore costing the charity less money in the long run to operate from the building than to rent an office space local to the charity.

The estimate to renovate the building and turn it into an office is just over £6000.00 however thanks to a local building company, those costs have been reduced considerably.

Ricky Murdoch from Murdoch Properties Ltd has kindly donated some materials, as well as his own Labour to help.

However we do still have to find £3000.00. This will cover the cost of some materials we need to purchase, further labour costs, computing equipment, storage and office equipment for the Office.

Can you please help by making a donation today ? THANKS

To donate click our donate now button and choose justgiving or paypal please type reference - OfficeDIYSOS when processing your donation. You can also text a donation by writing 'ROHH01 £5.00' to 70070. You can donate any amount just change the £5 to whatever you wish to donate.

Perhaps you can help in other ways by donating computing equipment ? materials etc please call the office number on 01389 753900 or email at [email protected] if you think you can help.

All funds raised via this campaign will be used to pay expenses relating to the charity office building renovation and office equipment. Should there be any surplus funds upon completion of works those funds will be transferred automatically to the ROHHAD Association main bank account and used to fund research into the rare life threatening disease ROHHAD.

2017 July

Edinburgh Fringe Festival Mass GOMADJUMPFORROHHAD challenge

ROHHAD Charity Office Appeal – DIY SOS

2017 July

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