Items tagged FindACure

BagPacking Event for ROHHAD at B&M’s largest UK store

We NEED YOUR HELP calling all family, friends and our local community. The ROHHAD Association will be BagPacking in B&M dunbarton store on Saturday and Sunday the 5th and 6th of December. This is expected to be the stores busiest weekend of the year. We would love to have buckets and packers on every till (8 in total) can you spare an hour or 2 or 3 !! The store has a policy adults only packing bags ! So we need as many of you as possible. This is a wonderful opportunity to raise much needed funds and we thank B&M for allowing us to help their customers on their busiest weekend and hopefully the customers will help us in return by donating. Call me on 07917225276 if you can help have a whole timetable to fill!! Finally if your shopping that weekend in B&M we will see you there ! Please be generous and make a donation Thank you ! Elisabeth (Aaron's mummy x)

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

FindACure

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