Items tagged GoMADforROHHAD

#AaronNeedsIronman

Please RT and help Aaron reach IronMan #AaronNeedsIronman he has terminal ROHHAD Disease & has special message 4 fav hero @RobertDowneyJr pic.twitter.com/9fppkTpKvB

— ROHHAD Association (@ROHHAD_GLOBAL) January 28, 2017

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 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 !!

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)

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

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 !!

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)

GoMADforROHHAD

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