Items tagged GoMADforROHHAD

Our Plans for 2016

Happy New Year to all of you from all at the ROHHAD Association.

Massive Thank You to everyone of our supporters in 2015 and to all those who contributed. It was a successful 1st year for the charity; which saw us become an SCIO official charity in May 2015, and go on to begin raising awareness and funds for medical research.

Our aim for 2016 is to continue working as hard to raise much needed awareness about ROHHAD as well as much needed funds for Medical Research.

We are all very excited at the ROHHAD Association to announce our plans for 2016 !!.

These will be kicked off with a very special #GOMADFORROHHAD challenge. The video will be released very soon and Aaron and all at the ROHHAD Association can't wait to see you all become ROHHAD Superheroes by doing the challenge!!. It is simple and a whole lot of fun we promise !

We have some amazing news regarding Research in the UK that we will be sharing with you all in coming weeks too...

Please Visit our Events Page for full details on each event planned.

In the mean time here is summary of events you could be a part of in 2016 to help the ROHHAD Association. Hopefully there is something to suit you and if not please remember you can #GOMADFORROHHAD and organise your own fundraiser in Aid of the ROHHAD Association.

Masquerade Spring Ball (organised by the Charity an event you won't want to miss) - 1/04/2016

Glasgow Kiltwalk Event - 24/04/2016 (sign up and Join our Charity Team walking for ROHHAD, see our event page for details on how to sign up)

7/05/2016 is ROHHAD Awareness day in America, we will announce our planned event for this soon.

3 Peak Challenge - very demanding physically (organised by the charity, our #GOMADWalkForROHHAD event is sponsored by McColls Coaches, see our event page for details on how to join the team) 3/06/2016 - 5/06/2016.

#GOMADDanceForROHHAD - Date TBC (event organised by the charity full details of which will be shared in due course, event is still being planned and organised)

Summer Family Fete - Date TBC

Great Scottish Swim- 26th and 27th of August ( If you fancy #GOMADSwimForROHHAD visit our events page for details on how to sign up to this amazing event)

Great Scottish Run - 1st and 2nd of October (If you fancy #GOMADRunForROHHAD then join our ambassador Lee Samuel and his team running and visit our events page for details on how to sign up to this RBS organised event)

Halloween Family Disco - 29/10/2016 (details will be available on events page soon)

Keep up to date with all our event updates and posts by following us on FB and Twitter (ROHHAD Association FB and @ROHHAD_GLOBAL twitter)

We cant wait for you to #GOMADFORROHHAD

Thanks for your support

B&M Fundraising HUGE SUCCESS

We are very happy to announce that the weekend Bag-Packing in B&M Dunbarton Store has raised a staggering £2150.30 (plus a couple of euros, a battery and a token for loch Lomond shores !!). This is a Fantastic amount and the ROHHAD Association is deeply grateful to all who worked hard packing bags and raising awareness for ROHHAD. We are also truly grateful to all those who donated; every last one of you have given us so much hope for the future and a Possible cure being found. We are so grateful to the B&M team at Dunbarton all of the staff were incredible and helpful too, thanks for allowing us the opportunity to raise funds and also much needed awareness for ROHHAD. Finally our children fighting ROHHAD face the biggest of battles. The battle for their Lives being the biggest. Statistically it is one we have been told they are unlikely to win; however with all of you fighting with them the odds will hopefully increase in their favour. Thank you all of you PLEASE continue to support us if you can and help us raise awareness and enough funds to help find a cure for the children affected. Continue to GoMADForROHHAD and be a ROHHAD Avenger !! Yours gratefully the ROHHAD Association xx For all those who wanted to do more to help please visit our full website and follow us on Facebook and Twitter for updates on fundraising events in 2016, you may also wish to purchase our charity single 'Light the World For You' available on iTunes Spotify etc artist is Lauren Hunter and all proceeds come to the charity thanks !!

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)

GoMADforROHHAD

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