September 2015 - ROHHAD Association

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

 

 

 

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