Items tagged GoMADforROHHAD

Exciting news – Christmas Light Switch On at Loch Lomond and ‘Light The World For You’

So excited to let you all know that YOUR Radio have invited Lauren Hunter and Singer station along to perform the charity single at the roadshow and Christmas light switch on in Loch Lomond this year. They will be performing the charity single 'Light the World For You' at the Christmas Light Switch on in both Alexandria and Dunbarton. Come along if you can and see the children perform the beautiful and poignant song that Lauren co-wrote for Aaron and all the ROHHAD children. They will be performing in the hour before the lights are switched on at 5pm and it may even be just before the lights go on ! The days are not to be missed and are often lots of fun for all the kids and family. See you all there ! So excited PS don't forget to visit our charity stall on the day and buy a copy of the charity single !!.

Details - Alexandria Light Switch On event Saturday the 28th of November 2015 from 12pm until 5.30pm, Alexandria Main Street, West Dunbartonshire

Dunbarton Light Switch On event Sunday the 29th of November 2015 from 12pm until 5.30pm, Dunbarton High Street, West Dunbartonshire

https://www.facebook.com/WDCCouncil/posts/918300211589208:0

Raising Awareness with Clyde1 Fm radio

Massive thank you to Clyde 1 Fm Radio for helping the ROHHAD Association raise awareness. Awareness and fundraising are vital to help UK research into ROHHAD begin. We need to find a cure and help improve the lives of the amazing children affected by ROHHAD. Because the children are so rare governments won't fund medical research. Please help us your support is vital to all the children with ROHHAD and their siblings, parents and families. Thank you

https://www.facebook.com/lisa.hunter.944/posts/700948476672603

Raising Awareness is Vital – Recent Article in Daily Record

We wish to thank the Daily Record and in Particular Amanda Keenan and Samuel Bell for helping us raise awareness of ROHHAD. The Daily Record has shared Aaron's story via the article below. Please read the full article. The headline highlights Hyperphagia, a symptom of ROHHAD that means the children never feel full and would eat and eat if allowed to do so. Aaron and all of the children affected by ROHHAD do suffer from Hyperphagia however they do not overeat. All of them are on very strict calorie controlled diets. To be very clear the obesity they suffer from is caused directly by ROHHAD itself not by overeating. The Daily Record do highlight this in their article and explain that Aaron is on a very strict diet and still gains weight in-spite of this. It also explains more about what ROHHAD actually is.

http://www.facebook.com/lisa.hunter.944/posts/693158027451648

GoMADforROHHAD

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