Uncategorised Archives - ROHHAD Association

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Christmas Light Switch On – 2017 Loch Lomond Shores

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We are delighted to share with you all that we have been chosen as one of the charities to be collecting this year at Loch Lomond Shores Christmas Light Switch on.

The date of the Light Switch on is Sunday the 19th of November.

We will be present all day at this incredible event.  We will be sharing full details soon about what to expect at this incredible event and how our charity will be participating in that.

We cannot wait to spend the day at Loch Lomond Shores when they switch the Christmas Lights On.  It is always a magical fun filled day that all the family can enjoy…………….. more details to follow soon

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Happy New Year 2017 ! Bring on the Fundraising and Awareness !

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HAPPY HAPPY NEW YEAR TO ALL OF OUR AMAZING SUPPORTERS AND AWESOME ROHHAD FAMILIES.

Apologies we have been a little quiet on the website these past few weeks, we were experiencing some server difficulties which look to be fully resolved now !!

What a fabulous year 2016 was for raising awareness and much needed funds to find a cure.  We had such a fun time at all of our events, from the spring ball to our family Halloween night.  Aaron has done a fabulous job of raising awareness with his social media video and some of the other kids have been doing the same, with families speaking to the press around the world and the kids doing what they can to raise funds and awareness.  THANK YOU to every single person who helped last year, we are deeply grateful for all of the support.

We still have such a long way to go but all of us at the charity are excited for 2017, we are hoping that this will be the year that we raise enough funds for research in the UK to begin ! as well as National and Global awareness ! Also hoping to do some more blogging about the children this affects so that our supporters can gain some insight into ROHHAD and who they are helping.

We have so many exciting things planned and will be posting details of those soon and in the coming months so please keep following our website posts and social media pages @ROHHAD_GLOBAL on twitter and ROHHAD Association on Facebook.

In the meantime Aaron still has ongoing his social media campaign #GOMADJUMPFORROHHAD !!  Our charity Ambassador Emily Middlemas recently completed her challenge and we cant wait to see more people getting involved including the X Factor Finalists.

If you have not done the challenge yet please see our homepage for how too ! and please Get Your Wellies On !!

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Dates of our events just now are;

Saturday the 1st of April 2017 – Masquerade Spring Ball

Sunday the 30th of April – Glasgow Kiltwalk

Saturday the 6th of May – Intu Braehead Shopping Centre, fun day

4th of June – Aberdeen Kiltwalk

Saturday 29th July –  Family Summer Fun Day

20th of August – Dundee Kiltwalk

Saturday 2nd September – Psychic Night

17th September – Edinburgh Kiltwalk

Saturday 28th of October – Family Halloween Disco

we are also hoping to have some bag packing, christmas street collections and possibly a christmas fayre.

(all information including venues, times and fun planned will be available by the end of January on our website)

 

 

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Marvel Universe LIVE! #GOMADJUMPFORROHHAD

We are delighted to share with all our amazing supporters wonderful news.  The team behind Marvel Universe LIVE! have been in touch with Aaron Hunters family and they have shown an incredible amount of support for him, his awareness campaign and the children battling ROHHAD.  4 of the actors who play the superheroes in the LIVE! show have completed the #GOMADJUMPFORROHHAD challenge and Aaron was so happy watching the video; he thanks them for completing the challenge for all the ROHHAD kids.  Please click the link below to the Daily Record Article to see the challenge video and Aaron’s response to it.

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They have also invited Aaron along to the LIVE! show when it comes to the SSE Hydro in Glasgow in January 2017.  Aaron will have the opportunity to meet some of the heroes and watch the incredible Marvel Universe LIVE! show.  As you can imagine he is already counting the sleeps.  To help Aaron in his mission to raise awareness and much needed funds for medical research they have donated an incredible 10 Family VIP tickets for the LIVE! show when it is in Glasgow; to the ROHHAD Association.  They will be raffled off to help raise funds for medical research into ROHHAD.

To be in with a chance of winning 1 of the family VIP tickets (family of 4) to see Marvel Universe LIVE! in Glasgow in January 2017 all you have to do is enter the Raffle.  Tickets cost £5.00 and you can enter via this just giving campaign page

https://www.justgiving.com/campaigns/charity/rohhad/aaronsmarvelloussuperheroesraffle

Please remember to leave your contact details on the Just Giving page and do not click anonymous donation as we will not be able to process your entry without your name and email or contact number.

All of the team at the ROHHAD Association are so grateful to Claire and her team at Marvel Universe LIVE! for the support they have shown to Aaron and the children around the globe battling ROHHAD.  Aaron has been incredibly happy since seeing this video and he reckons his special friends around the world will be too.  He has even asked if this means that the real Iron Man (Robert Downey Jnr) will do the challenge now !! we can but hope ! Whatever happens though Aaron is on top of the world just now with the support he has had from Marvel Universe LIVE! and is counting the sleeps until January!!

If you want to help then you too can #GOMADJUMPFORROHHAD and text ‘Jump29 £3.00’ to 70070 or you can enter the Marvel Universe LIVE! raffle.  You can also contact Lisa on 07917225276 to purchase Raffle tickets or Louise on 07881100083.

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