ROHHAD

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

2

New Charity Merchandise Just Been Added! Check It Out

Hop On Over to Our Merchandise Page to order Some New goodies that will help fund Important Medical Research into finding a cure for the ROHHAD Children

Welcome to our NEW Charity Merchandise Page We currently have T-shirts, Wristbands and Baseball Caps available for sale. Coming Soon we will have a few new designs in our T. Shirt Range as well as Charity Coffee/Tea Mugs and Keyrings for Sale.

To place an order please click the link to email our charity office and they will help you order.

[email protected]

New Merchandise

New Charity Wristbands in our bright logo colours of Orange and Green as well has having our logo on them they say 'Team ROHHAD Avengers' and also our hashtag #GoMadForROHHAD

Wristbands begin at £1 or $1.50 for a child size and £2 or $3 for an Adult size. Price may vary depending on size of order. If ordering in bulk ask us about our discounted price.

New Charity Baseball Caps You can choose to have it say #GoMadForROHHAD or ROHHAD Avengers - Cost of Baseball Cap is £10.00 or $14.00

Adult T-shirt with printed design front and back £14.00 or $18.00 plus postage, Watch out for New Designs coming soon

Adult T-shirt with printed design front only £12.00 or $14.00 plus postage

Adult sizes: Small, Medium, Large, X Large, XX Large and XXX Large

Childrens T-shirt with printed design front only £10.00 or $13.00 plus postage

Childrens sizes: 5-6, 7-8, 9-11 and 12-13 years

Wristbands - our old stock is now reduced they are black with green print plus postage, only 50p plus Postage

UK and International Postage charges vary depending on weight of item so please email us at the charity to be given a full quote including postage and packaging for your order

To order email us now

[email protected]

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