My name is Mark Tripp and I am married to Kelly and have two beautiful children Adam (14) and Zoe (12). Adam has 22q11 deletion syndrome and like so many was only diagnosed after a 6-year search for answers as to the many issues that he must overcome. As a family we were lucky to find Max Appeal early on in our 22q11 journey and with a desire to help spread awareness and support others I was honoured to be asked to join the board of trustees in late 2016. My main role sees me active within the Facebook support group and assisting families both locally and nationally and arranging fund raising events. I can always be found at Max Appeal meet ups where I am always happy to take the time to stop and chat so if you see me please do not be shy.

Like the other trustees I juggle my responsibilities between work, family and Max Appeal with an ever-increasing busy schedule but it is my work for Max Appeal which brings me the greatest pleasure as I know when we get it right we are able to make such a difference to our extended 22q11 family.

As I type I am busy arranging our ongoing response to Covid-19 for our members and I’m incredibly proud to have been able to start our new online support programme from scratch, with the support of volunteers we have been able to reach out to members in new ways and this gives me heart that we can reach out even further in the future.

 Now I'm sure you will agree that is a lot for a small board to deal with but as usual we also commit to providing the day to day support either on fb, via email, telephone or at meetings that so many families find vital.

I want to finish by telling a story that happened to me recently as I want to highlight to everyone the importance of making sure you don't ever give up seeking answers and diagnoses from medical professionals, these lessons also extend to education and beyond.

'I was recently helping a wonderful small charity in Biggleswade which provides support for families with ASD, my simple job was to go door to door around local businesses and ask if they would display a small poster advertising their support group. Without fail as soon as I mentioned the word 'autism' I could see an instant change in the way I was received, and I'm pleased to say that over twenty businesses went on to display the posters.

What's the lesson you may ask, well as a family like so many of you we had been told repeatedly that Adam had autistic tendencies and yet no one wanted to formally diagnose the condition, through determination and a reluctance to stop asking we were lucky enough, if that's a correct term to use, to get a full diagnosis of ASD for Adam. This diagnosis has helped us unlock avenues for extra support for our family, this has had a huge change in the way school help Adam manage his day. So whether its ASD or any other medical condition I am passionate that it's important healthcare professionals formally diagnose these conditions as this helps to access support both medically and educationally, this is without the extra benefits for supporting PIP and DLA applications. I too was fed up and beaten as parent hearing far too often 'well we don't want to give Adam another label'. It was when we realised that sadly 22q11 alone was not going to unlock the help he deserved that we learnt the art of persistence.

We will continue to raise awareness of 22q11 conditions at Max Appeal through our extensive network and of course the APPG, but in the meantime keep pushing for those diagnoses, you as parents, husbands, wives, siblings and carers etc are the best advocate anyone with 22q11 can ever wish for.

I look forward to meeting with friends both new and old in the years ahead.

(June 20)