FD/MAS Global Awareness Week
We are excited to announce the Fibrous Dysplasia & McCune-Albrights Syndrome (FD/MAS) Global Awareness Week including our plans to celebrate the occasion whilst raising awareness internationally of the condition. During this week, fundraising events will take place internationally hosted by organisations supporting FD/MAS in countries such as USA, Spain, Italy, France and others. We are pleased to share the information regarding our fundraising event with you all.
During the awareness week, which will run from the 20th to 27th February 2020, we will be running our project - FD Making Waves.
This is a national event where people across the UK can swim to raise money for FDSSUK and patients, carers, family members and friends are all welcome to take part. It doesn't matter how far you can swim, whether it be one length or 10 lengths, walking in the water or even just a few gentle water exercises. We all have different abilities but all we ask is that you push yourself to achieve something you didn't previously think possible and help support individuals with FD/MAS.
In planning this fundraising activity, we recognised that travel and mobility issues can be a huge challenge for many affected by FD/MAS. So this is a fundraising activity you can do individually or as a group at your local swimming pool, rather than everyone travelling to one location.
The money raised will be used for bone pain research, a wheelchair/equipment fund and funding for patients to attend events hosted by FDSSUK.
The FD Making Waves poster is available for download in PDF format here. There is also a website where you can get involved to perhaps share your story and why you want to take part, inspire others in training and benefit from communicating with the wider FD/MAS community.
Also attached is the joint promotion notice about the Awareness Week which has further information about how the Awareness Week was formed by members of international FD/MAS patient groups. We would please ask that you do not alter the FD/MAS Awareness Day logo in any way as it is copyright protected.
All the information can be found on the FD Making Waves Website, or you can email fdmakingwaves@fdssuk.org.uk
On behalf of all the FDSSUK Trustees, who have helped organise this event and everyone affected by FD/MAS I would like to thank you very much for your support.
22/1/2020
Race To The Stones
Fundraising Event: Race to the Stones, 04 Jul 2020 to 05 Jul 2020
Colin Daly has signed up to take part in a 100km ultra marathon across the Oxfordshire ridgeway in 24 hours. He has had just under a year to prepare for the challenge and as this will be second time he has participated he is fully aware of the physical and mental test he has before him.
He has chosen Fibrous Dysplasia as a worthwhile disease to participate in the event for two reasons.
- Firstly his mum was diagnosed with Fibrous Dysplasia over 40 years ago
- Secondly he wants to raise awareness about the disease and funds will be used to support the FDSSUK charity in this.
Not all diseases are visible to the naked eye but he knowd that the pain endured on a daily basis by those affected can be unbearable. Then there is the endless specialist appointments and trials being carried out, along with a lack of funding for extensive research.
There is currently no cure so it’s all about management of the disease and the more research that can be done the more it will ultimately be used to help support and assist suffers of the disease.
The best way to help Colin in his endeavour is to donating through JustGiving, as well of course provding him with some words of encoragement. Use of Justgiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. You can also gift aid should you wish. It is the most efficient way to donate - saving time and cutting costs for the charity.