ROHHAD Archives - Page 13 of 16 - ROHHAD Association

Jaxon’s Blog

Meet Jaxon jaxon 1

Jaxon is 5yrs old and lives in Canada with his mum and big sister. He is a massive Superhero fan ! The photo above was taken last week on his 5th birthday.  Jaxon has been diagnosed with ROHHAD and his mum Shanel will blog on the website from time to time to allow our followers and supporters an insight into Jaxon’s ROHHAD Battle.

Shanel has been doing all she can to raise awareness in Canada and Jaxon was recently on the news (click the link below to view the video)

http://globalnews.ca/video/2305670/rare-condition-causes-rapid-weight-gain-in-children

Jaxon 2

Jaxon has like all the children battling ROHHAD spent a lot of time in hospital fighting for his life.

Keep following our Social Media pages and check in on the website from time to time to hear and learn more about Jaxon and how brave and strong he is.  Shanel will be blogging soon

Thanks

MUST SEE – #GOMADJumpForROHHAD

YOU NEED TO SEE THIS PLEASE WATCH THE VIDEO

This is Aaron’s video message that he wants everyone to see.  In it he tells you all how ROHHAD has affected him, what his future may hold and how he really needs YOUR HELP.  Please take the time to watch Aaron’s video to YOU and then do his social media Challenge. Help him and all the other children battling ROHHAD.  Help his message reach all the superheroes in the world.  Aaron has challenged all his family and friends in primary 2; he has also challenged his favourite superheroes Iron Man, Captain America, Thor, Hawkwye, Black Widow and Nick Fury.  Share his video so this message reaches the actors who play the superheroes.  Then become a hero yourself by doing the challenge and donating.

All you need to do is

1. #GOMADJumpForROHHAD, find a puddle (it can be the snow, beach or pool for those in warmer or colder climates than here in Scotland) and run and jump up and down for 1 full minute.

2. Remember to film your challenge and don’t forget to challenge 3 more people.

3. Upload your video to social media and donate by texting JUMP29 £3.00 to 70070 or donate via our website.

4. Tag us in the video via ROHHAD Association on FB and ROHHAD_GLOBAL on twitter

We cannot wait to see all the videos.

Finally today as we post this Aaron has just watched an endocrine Dr in America Dr Sprague do the challenge and he now wants to ask his consultants at the Children’s Hospital in Glasgow to do it too !! as well as his nurses and the sleep team !! his request honest !!.  So Dr Shaikh, Dr Davies, Dr Barclay, Dr Noonan, Lynda, Ethel and Andrew and all his sleep team will you accept the challenge ?? we hope so!!.

Be a true superhero today and #GOMADJumpForROHHAD

Thanks

DONATE by texting JUMP29 £3.00 to 70070 or via our website today just click the donate now button

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

 

 

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