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FOP Friends Blog
Mari Wyn Jones
Thursday, 7 July, 2016 - 10:41

We are delighted to announce that BBC Children in Need have awarded a grant to FOP Friends to fund an Activity Weekend Break for children aged 18 and under, affected by FOP. Our chosen date is the weekend of 17th - 19th March, 2017 and the destination is Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area. 

Center Parcs Sherwood Forest boasts a variety of activities to suit children of all ages including the subtropical swimming paradise, soft play areas, craft activities and treasure trails. 

This fun-filled weekend will give our children the opportunity to come together and try exciting new activities in a relaxed and safe setting. The Activity Weekend Break also offers a welcome opportunity for parents and family members to meet, share experiences and spend quality time together in an enjoyable environment. 

We will be in touch in the next few weeks with more information about this exciting event, but for now please SAVE THE DATE!

Mari Wyn Jones
Wednesday, 1 June, 2016 - 10:01

We hope to raise awareness on International FOP Awareness Day and throughout April with ‘Fun Feet for FOP’ photos and #FunFeet4FOP. It’s been a busy 10 years for FOP researchers and clinicians following discovery of the ACVR1 gene that causes FOP on April 23rd, 2006. This research breakthrough was pivotal in improving diagnosis for FOP patients and progressing the search for a cure. Within the past decade genetic testing has been made available to improve patient diagnosis, the amount of interest from researchers worldwide has increased, and more recently we’ve even seen the launch of the first clinical trial for FOP. 

So why Fun Feet you may ask? Well, an important early indication of FOP is malformed big toes at birth. This classic sign is often unrecognised due to lack of awareness of FOP and it’s symptoms, leading to misdiagnosis (often of cancer).  


We will be getting together a Fun Feet Countdown on Facebook and Twitter, up to April 23rd and
We Need Your Help!
              

Get involved with 4 simple steps:

Step 1

Tell your friends, family, colleagues...everyone and share the link to this webpage.

Step 2

Find your style and take a photo! Ideas include: Wearing snazzy socks, wacky wellies, bizarre boots. Get creative with an eye-catching pedicure, or take a snap of your pet in slippers! You could even hold a Fun Feet Day at the office, or a Flip Flop Day, asking participants to donate, with proceeds going to FOP Friends.

Step 3

Upload your photos on social media along with the hashtag #FunFeet4FOP. Be sure to tag FOP Friends on Facebook and Twitter and add the link to this website page.

Step 4

Share your social media posts with friends and followers and include details about how to donate to FOP Friends:

Text CFOP00 £20 (or any other amount) to 70070 or Donate Online via Virgin Money Giving here. You could even set up your own fundraising page on Virgin Money Giving. 

If you have any questions or would like some more ideas, please contact us. We will be running a competition for the best post - so be creative! We can't wait to see what you come up with.                                                                                                                                 

We thank you for your support in raising awareness for one of the rarest conditions known to medicine.

      

 
 


                               
 


 

Mari Wyn Jones
Wednesday, 1 June, 2016 - 10:02

The FOP Patient Connection Registry 

The FOP patient’s registry is an exciting initiative developed by the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) to help understand and learn more about FOP. This research study will collect and report selected medical information on individuals living with FOP, through a series of online surveys. 

“A registry is essential for understanding any rare disease and developing potential therapies.” Said Betsy Bogard, IFOPA Director of Global Research Development, talking about the benefits of an FOP patient Registry. “One of the biggest challenges in very rare diseases such as FOP is limited patient data. The FOP Connection Registry puts the power of data collection directly into the hands of the patient community and will allow us to bring together a much larger volume of data.”

Once registered, participants will be able to complete as much of the surveys as they would like - the more information the better, but if participants can only fill in a few survey items, even that data will be helpful. The surveys may be completed by the individual living with FOP or by someone else – for example, a parent, relative, or other caregiver on the participant's behalf. In some cases, more than one person will complete the survey questions – whatever method works best for the individual and family will work for the Registry.

Not only will the registry help increase knowledge of FOP, aid research, and help guide clinical trial design, it will critically show pharmaceutical companies that the FOP community are pro-active in the search for a cure. Together we will make a difference!

For more information on the registry and how to join visit: www.ifopa.org/registry


Clementia Pharmaceuticals are currently trialling a treatment for FOP.  Want to learn more? 

Clementia have produced a document, with UK information, for patients who want to find out more. Including the answer to; Who is Clementia? What are the objectives of Clementia's clinical trial program? Who is eligible?...and more.

 Click HERE or on the link below to download the document.

Mari Wyn Jones
Tuesday, 26 January, 2016 - 09:51

FOP Friends are delighted to announce that we have successfully applied for a grant from The Big Lottery Fund, Awards for All England programme to help fund the FOP Friends UK Conference & Family Gathering, May 2016.

The first UK FOP Symposium for FOP patients and their families held in May 2014 was a resounding success and we are delighted to have the support of The Big Lottery Fund for the 2016 conference. FOP Friends are busy planning for this event which will include presentations, clinical appointments, workshops and advice for people living with FOP. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel. The main event is on Saturday 21st May 2016 with pre-booked clinical appointments available with our world renowned FOP experts on Friday 20th, Saturday 21st (afternoon), and Sunday 22nd.

FOP experts from around the world will be in attendance with clinical sessions being led by Professor Fred Kaplan and Dr Robert Pignolo (University of Pennsylvania, USA) and Dr Richard Keen (Royal Stanmore Hospital, UK). Workshops will be held during the day with an opportunity to break off into groups to discuss topics of interest.  Childcare and activities will be provided for those with young families.

Booking information for this event, including clinical appointments and childcare will be announced soon!

You can see some information from the 2014 Conference & Family Gathering HERE.

Lottery logo

 

Mari Wyn Jones
Thursday, 14 January, 2016 - 11:59

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