ROHHAD Research

Our very own Hero “AaronMan” Wins Pride of Britain Award 2019

We are thrilled and so incredibly proud to share with you all that our very own selfless, brave, and inspiring superhero AaronMan has won the Good Morning Britain Young Fundraiser Of The Year Award; at this years Pride of Britain Awards.

Pride Of Britain Award - Aaron Hunter with his family mum Lisa, sister Lauren with Ben Shepherd, Susanna Reid, and Cheryl. 28.10.2019 Picture by Tim Merry©

We will be updating our website and social media pages over this weekend and into next week with a full reaction from Aaron, on how he feels about winning the award, his hopes for ROHHAD research and how the night went.

Aaron has asked us to share a few words with you all that he wanted to say at the awards, however due to severe social anxiety and how debilitating ROHHAD is, he was unable to say all that he wanted too. He did manage to collect the award and dedicate his award to all of his special friends with ROHHAD and for him that was the most important thing, he was determined to do this despite how poorly his ROHHAD makes him feel.

He also wants you all to know he had an incredible time, really enjoyed the night and that he was so well cared for and looked after by all of the team at Pride of Britain. He said to say you need to watch the show to see why the night and all the other winners were incredible!

AaronMan’s words

“ Thank you so much to Pride of Britain and to everybody who voted for me to win this Award. I would like to accept the award and dedicate it too all of the ROHHAD Children. This is for you! Your my reason for wanting to find a cure I know how hard and painful this is and I want to help make you better.

Thank you so much to IronMan and to everyone who did my muddy puddle challenge and to all the people who support the ROHHAD Association charity. It’s because of you that we can begin Medical Research now.

I know we need to raise a lot more money if we are going to find a cure and I promise I will try my best to keep fighting and raising funds I’ll keep thinking of ideas to help.

If anyone here wants to help you can still do my #GoMadJumpForROHHAD “ muddy puddle” challenge it’s not too late. Plus there’s plenty of rain just now so lots of muddy puddles !!”

Aaron Hunter (9 years Old)
Pride Of Britain Award Winner 2019
“Good Morning Britain’s Young Fundraiser of The Year”
#ROHHADAvenger
#Superhero

To See Cheryl Present Aaron Hunter with his Pride of Britain Award in a Daily Mirror Exclusive Click Here

Pride of Britain Awards 2019 - Cheryl with Aaron Hunter winner of Young Fundraiser award. 28.10.2019 Picture by Tim Merry©

Aaron Hunter (with mum Lisa) receives Pride Of Britain 2019 Good Morning Britain Young Fundraiser award from Cheryl Cole, Ben Shepherd, Susanna Reid
Aaron Hunter (with mum Lisa) receives Pride Of Britain 2019 Good Morning Britain Young Fundraiser award from Cheryl Cole, Ben Shepherd, Susanna Reid

Good Morning Britain fundraiser winner Aaron Hunter received his award from Cheryl Cole, Ben Sheperd and Susana Reid at the 20th Pride of Britain 2019
Picture Andy Stenning

The Pride of Britain Awards will be aired on ITV on the 5th of November 2019 at 8pm, please watch to see Aaron collect his Award and also to see the other inspiring and incredible winners on the night.

1

ROHHAD Research, child and family participants required urgently

Good evening everyone, we will over the next few days be emailing the families who have agreed for us to contact them regarding medical research however time is vital for this particular research project as the time line has been altered by those funding the exome sequencing and samples are now required sooner.

Therefore we are sharing this on all ROHHAD pages including the charity public pages and websites. Please consider signing up for this and participating this is the project I have previously informed you all about and they require your child as well as parents (were possible) and siblings were possible.

A few things to note the timeline has been changed you will need to participate sooner than first expected and before the end of August so time is against us therefore if you want to participate please contact Dr Thaker Team ASAP.

You NEED to contact Dr Thaker she cannot contact you and we cannot pass your details on see the photo below for her contact details.

You will need to sign consent possibly more than once due to some potential changes.

You will if you agree to do it be sent blood sample bottles and you will need to make apt with your physician/ GP to have the blood drawn... the charity is willing to cover return postage costs and help organise the same day parcels collection with you.

Just let us know when you have the bottles / consent and questionnaire forms/ when your samples are booked to be taken and we can help you with the rest. For that you need to email us at [email protected]

We will be speaking to our friends at RA Belgium to see if we can have the forms translated into different languages were required we currently have English and Spanish.

If you have any questions pop them down below in comments or email me ! I’ll try my best to answer.

Finally we can have up to 75 families participate in this if you have had your exome done before you can have it done again. If you have worked with other research teams previously please consider helping this team too we are all in it together and the only way to understand this disease better, improve treatments and find a cure is to participate when we can in the research. So please contact Dr Thaker and us too if you have any questions or require help shipping back your samples!

There will be more research posts from us as we move forward with releasing the £275K we have raised for research.

Thanks in advance to all who participate
#GoMadForROHHAD #MissionFindACure

4

Open Letter from our CEO Elisabeth with an important Research Update

An Open Letter from our CEO and Co-Founder with an Update on ROHHAD Research

Good Evening ROHHAD Avengers!

We are excited to announce that the process of awarding funding for ROHHAD research in 2019/2020 is almost complete.

The charity received four proposals in total from four different teams of researchers across the globe and all of them met our funding criteria. Each proposal for funding is incredibly exciting and offers enormous potential to help the medical industry unlock some of the mysteries around ROHHAD Syndrome.

Idealistically the charity would fully fund all of the proposed research projects but regret that we are unable to fund all of the proposals at this point in time due to financial constraints The charity are fully committed to raising the funds necessary to enable further research in the future.

At this stage, we have £275,000.00 that we are ready to allocate. Consultation was carried out with the families affected by ROHHAD Syndrome in the early stages of our work to determine the research criteria. Our team of peers reviewers have now analysed the applications that were received and made recommendations to our Board. Over the last few months, the Board have been deliberating over each of the applications. We have now reached a final decision, which was based on the best fit for our research criteria.

We will be making a public announcement in the next couple of weeks once all contracts are signed and we are in a position to tell all of our supporters who we will be working with over the next two years.

As always our mission remains steadfast to find a cure and we believe that the project(s) we will be funding and the team(s) we will be working with will help us achieve our mission in time.

Thank you to everyone who has supported our charity and donated funds to allow us to release such a substantial grant. We have so much more to do and our hard work is only just beginning, we hope we can continue to rely on your support as we cannot do it without YOU! Together we will make a difference and find a cure.

Yours Truly

Elisabeth and all at Team ROHHAD Association

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