Updated: Apr 3, 2019
In January my dance school – PAD (Power Academy of Dance) performed our bi-annual dance show, our chosen charity is the Fragile X Society. I wanted to raise awareness and some money to help the charity as my dad has FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome), plus both my sister and I are premutation carriers. 160 pupils took part in the performance of 'A Winter's Tale' and we also hosted a raffle.
My dad was ill for some time before we got the correct diagnosis. At first, we were relieved to be able to put a name to his illness, but we have found not many people have heard of it and we’ve found this can make for an extra struggle. My dad is now bed bound, some days are better than others but FXTAS is a horrible illness and I hope there can be medication in the future to help.
I have a 9-year-old daughter who hasn’t been tested yet. I hope the money we have raised will help in her future. I had FXPOI (Fragile X-Associated Premature Ovarian Insufficiency) at age 32 which meant I couldn’t have more children. I hope my daughter isn’t a carrier but if she is, I hope knowledge of all the Fragile X conditions will have improved. She took part in the performance and made me very proud.
We have raised £2000 for the charity from this performance. Plus 1000 people have now been introduced to Fragile X.
- Keely Power, Power Academy of Dance
We are so very grateful to Keely, as well as to all the pupils who took part in the performance. The money raised will be used for our work such as supporting other families living with Fragile X, as well as supporting research and educating professionals. Keely also did a fantastic job of raising awareness, including having an article published about the fundraiser in her local paper.
Sadly, as Keely mentioned, FXTAS is still under-recognised, despite the importance of getting the right diagnosis and support. If you would like to speak to us about FXTAS, then you can contact our Senior Families and Professionals Advisor (Jane Oliver) on: firstname.lastname@example.org or 0137185100. Jane can also discuss the recently established FXTAS clinic at the Walton Centre in Liverpool, and how you can request for a referral to see Dr Alusi.