ROHHAD News Archives - Page 5 of 7 - ROHHAD Association

#AaronNeedsIronman

 

Aaron Hunter has made a new video to his favourite hero IronMan (AKA Robert Downey Jnr).  

He is appealing to his favorite Avenger to help him raise awareness and funds to help his doctors carry out research into his rare terminal disease ROHHAD.  He is asking for his help because some of his friends with ROHHAD have died and he doesn’t want anymore of his special friends fighting ROHHAD to die.

All Aaron wants Ironman to do is his #GOMADJUMPFORROHHAD challenge !! oh and he also asks him to come and see him so he can talk to him about it !!

Can you help us make this happen for Aaron ? and all the ROHHAD Children ?  Are you on twitter and facebook if so please follow us and share Aaron’s video with his favourite hero.  Do you know anybody who could help make this happen for him ?  It is his wish and dream just now that IronMan helps him in his awareness and challenge campaign.  Please show your support if you can help in any way and if your up for it why not do his challenge too ? Pull those wellies on and #GOMADJUMPFORROHHAD.

Aaron has done amazing things so far he has reached almost 600K people on Facebook via his original video and his challenge has helped to raise £30K in the past year alone which is incredible.  We have a long way to go though, it will cost £300K for 1 year of research and much more to keep it going so please please help us if you can ! Aaron is not giving up he is reaching for the stars (quite literally) so please help him and get tweeting, jumping and sharing !!

Much Thanks all at the ROHHAD Association 

 

0

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

happy new year image

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 !!

lee samuel 2

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)

 

 

7

Delighted to Ask for Support for our New Charity Ambassador – Emily Middlemas

SOME MORE AMAZING NEWS !!

Hello to all of our followers thank you so much for sharing Aaron and the ROHHAD Associations amazing news last night that the Marvel Universe LIVE! Heroes completed his puddle jump and are supporting his campaign to #GOMADJUMPFORROHHAD .

Today we want to talk to you all about this amazing young Lady here her name as some of you will know is Emily Middlemas she is such a beautiful talented young lady with the biggest heart to match her musical talents.

emily-x-factor

Emily is a huge supporter of the ROHHAD Association and of the children battling ROHHAD. She offered a few months ago to help the charity and Aaron in every way she could and agreed to be our charity ambassador. Since then she has progressed in the X Factor and has been super busy however having spoken to her last night she is still so determined to help Aaron just as soon as she is able too so we are asking all of you to please show your support for her in the way she has supported us!

Vote for her this week and every week she is on the show. As well as being the most talented on the show we cannot think of anyone better who deserves the votes. Her heart is huge she has helped Aaron and Lauren in so many ways and did not have too ! Lauren adores her and admires her Aaron simply put it ‘I just love her mum !’ She has spent time with them when they were sick in hospital and has cheered them up, she also has helped support our charity events and you may remember performed at our spring ball this year.

She is a genuine caring young lady who puts her heart and soul into everything. We will be voting for her every week and it’s so easy to do ! You can download the X Factor app and vote 5 times completely free of charge ! You can also text for 35p (watch the show each week for her number !) I will post all details on how to vote each week on FB and twitter ! But hoping you will all get behind her as she truly deserves this ! Watch the show and I’m sure you will agree. Please get behind her and support her like she supports our charity !! I will hopefully be sharing with you all soon A statement from Emily about why she wants to help the ROHHAD Association but for now let’s show her we appreciate her talent and support by voting !

#VOTEEMILY #EMILYTOWIN #EMILYHASTHEXFACTOR

Much thanks from all the team at ROHHAD Association

This Campaign has ended. No more pledges can be made.