NAA10 mutations are extremely rare with the chance of having one being just 1 in 11 Million!
These mutations cause severe and wide-ranging learning disabilities, complex health needs, physical and mental challenges and sadly in too many cases have a fatal outcome for a child.
NAA10 mutations have only very recently been identified and prior to this, parents were unable to access support or information, until they were brought together by one pioneering parent who set up a closed social media support group in 2016. This community subsequently setup the ‘NAA10 Families Together’ patient organisation.
Many parents in this group felt isolated and in the dark for many years without a diagnosis and now we want to work together to unite and support families, empowering them to face the future challenges of bringing up a child with an NAA10 syndrome.
Our Mission is to:
- Connect and support families by providing a secure online community to openly share personal experiences and gain emotional support and guidance from each other as we are faced with unpredictable challenges, and our children growing into young adults.
-Provide current, clear information, through an NAA10 website for families and professionals to refer to
-Develop patient information leaflets to be shared with families at the time they receive their diagnosis
- Provide engaging social media channels to increase awareness among rare disease networks, medical professionals and the wider community
-Engage in and enable future clinical research which is in its infancy, by continuing to work closely with our genetic research specialist who is based in New York, USA
-Raise funds to support the vital work of the patient organisation which provides a lifeline to families and fund future research to find a treatment for all of our NAA10 warriors and a future generation of children.
The organisation is run by parents on a voluntary basis and funded 100% by voluntary donations. We receive no government funding. Raising funds is absolutely vital to enable us to reach all families affected by NAA10 syndromes and ensure that medical research is ongoing.
There are many different ways in which you can help us with our fundraising efforts. Please support us and our very special families by donating personally, creating a fundraising opportunity, and by spreading awareness about our cause.
We would also be delighted to support you with any ideas you have to help us raise much needed funds for ‘NAA10 Families Together’.
Help us to give our NAA10 warriors the futures they deserve.
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