We have great news that even though we never reached our fundraising target last year the Research team will be unaffected. Together we raised a brilliant £106,039.77. This is due to Georgina from the Research team being on Maternity leave until after Easter and funding for this was found from elsewhere. So yet again the barometer is empty and we really need to keep the Research team working hard as we are getting closer to better treatments and clinical trials. We have had the continued support from FOP France and Friends of Oliver and many FOP families in the UK. As we all know though with FOP being so rare its really hard for families to keep fundraising each year. Any support is really appreciated and please get in touch if we can help in anyway.
Jasmine is now 7, She still loves playing with her babies and Barbie’s but now loves her ipad. She is doing well at school and has some lovely friends. The last few years have been really good for her but since Christmas she has suffered from a few flare ups. We are hoping her FOP calms down soon with no new restrictions and she is feeling herself again soon. She is a determined little girl and recently learnt to put her own top/dress on herself. Since her shoulders locked when just nearly two she has always needed help. We are looking forward to meeting everyone at the upcoming Symposium especially all the brilliant Researchers who are working hard to help. Even a pharmaceutical company Clementia will be attending so we are hoping to hear about some possible future clinical trials. Jasmine probably wont take part in these trials as children probably wont be included. We will keep everyone updated with any new news.
We would like to thank Ami Ford who held a brilliant three hour Zumbathon to raise money for Research, we really appreciate it and know it took a lot to organise. She raised a brilliant £1645.80. Thanks to everyone who took part and helped out, everyone did really well especially the children that took part.
I would like to thank everyone at Miss Toni’s Academy where Sienna and Jasmine go to a performance arts class. At the show before Christmas a raffle took place to raise funds for Research and a brilliant £300 was raised. The night was brilliant and Jasmine did so well singing her first solo.
Jasmine on the front row , fourth from the left.
Also thanks to everyone who didn’t send Christmas Cards and donated instead.
Looking forward to the rest of 2014 and wish everyone a happy and healthy 2014. Best Wishes Kelly mum of Jasmine.