Two New Trustees
We are delighted to welcome both Dr Sarah Jones and Dr Matthew Harper to the Board of Trustees.
Sarah is a senior lecturer at Manchester Metropolitan University and Matthew is a senior lecturer at University of Cambridge. We look forward to working with you both.
Research Grant in the News
PFD Fact Sheets available
With the support of the TUUT we have produced and published through our Resource Library a series of fact sheets on Platelet Function Disorders (PFDs):
- Glanzmann Thrombasthemia
- Hermandsky Pudlak
- Bernard-Soulier Syndrome
- MyH9 related disorder
- Grey Platelet disorder
Hear from others
“It has been fantastic for my family to be involved with the Gapp study. For generations we never knew exactly why we bleed and the study has provided us with the opportunity to look into this. We are very grateful for the work that has been done and thrilled to understand our platelet disorder in more detail.
If you would like to find out more about Hermandsky Pudlak syndrome, click here for our fact sheet.
also available in the Welsh language – please request your copy by email to: firstname.lastname@example.org
Fundraising through booking your hols
With www.easyfundraising.org.uk you can raise funds for The Platelet Charity whilst you book your summer holidays. Its free and easy and it helps us to help people with bleeding disorders
Musical Evening of Fundraising
Our thanks to Dr Marloes Tijssen and her colleagues at All Saints Church in Newmarket on Saturday 5th September for a fundraising evening of wine, cheese and musical entertainment. The evening raised £500 for platelet research. Thank you!
Park High School Donation
Huge thanks to Year 13 school leavers from Park High School Stanmore who raised a whopping £1,000! We wish you every success in the next step of your journey. Thank you once again.
The Final Swim - Isle of Wight - Sept 19th
The Isle of Wight is a great holiday destination, but how many people can say they swam there from the mainland? Well our intrepid Rob Evans has completed his final swim to the Isle of Wight. Well done Rob!!
Penultimate Open Water Swim Complete
Rob Evans has now completed a 2 mile swim in Loch Lomond – what a star.
Now its just to swim to Isle of Wight…..
click here to read BTs’ article about Robs’ amazing fundraising efforts through his series of open water swims.
Swimming in Cornwall
Port Isaac was the beautiful setting for the fifth swim. This is the area where the TV series Dr Martin is filmed ( I think!)
Fourth Open Water Swim Complete
The Great Pier Swim in Southend – famous before, but even more famous now that Rob Evans has completed his fourth open swim in a row.
Fun(d) day at Haemophilia Centre N Hants
A great day for patients, staff, family & friends at the Haemophilia Centre (Uplands House) in the grounds of Basingstoke Hospital (North Hampshire Foundation Trust) and HQ for the Haemophilia Southern Network. A great time was had by all and we raised nearly £1,000 in the process!
NIHR non commercial partner status
National Institute for Health Research (NIHR) status for us now means that :
Appropriate research studies funded through our organisation’s eligible funding streams are now automatically eligible for NIHR Clinical Research Network (CRN) support and therefore entitled to:
· Use the NIHR Coordinated System for gaining NHS Permissions (NIHR CSP) which is accessed via the Integrated Research Application System (IRAS)
· Access NHS support via the NIHR Clinical Research Network.
The Tea Shop Tastings Raises £500
Thank you to Alan and Ramona owners of The Tea Shop for the unique tea tastings that they hosted. We raised over £500 from the support from these 3 events. Thank you to the people of Devizes who came to the evenings and we hope that you will continue to frequent The Tea Shop at 6 The Ginnels, Devizes for more fabulous loose-leaf tea and scrumptious cakes & lunches.
Second Open Water Swim Complete
THE HENLEY CLASSIC is a 2.1 km endurance upstream River Thames swimming event, held over the Henley Royal Regatta course, very early on the Sunday morning before the Wednesday start of Henley Royal Regatta.
153 19 Rob Evans 00:39:06
Academic Research Acclaimed at ISTH 2015
Wow ! Ben Johsons paper on the discovery of new genes through the GAPP project was one of the top 10 abstracts at ISTH out of over 2,700 that were submitted.
Ben Johnson is one of the researchers within Prof Steve Watsons’ team at University of Birmingham participating in the national Genotyping & Phenotyping of Platelets Project (GAPP) .
First Open Water Swim Complete
Robs’ first swim is 2 miles in Lake Windermere. Wishing you all the best for the first of these amazing endeavors!
Next stop is on June 28th at dawn following the route of the Henley Regatta in the Thames…..
SHN meets Prof Steve Watson
Professor Steve Watson from Birmingham University was invited by the Southern Haemophilia Network to present information on his latest platelet research. It was a great opportunity for people to come and learn about platelet function disorders, why they are difficult to diagnose, how they are tested and the platelet charity’s involvement.
Joining the BHF Warwickshire Ride
We were delighted to be able to join the British Heat Foundation Warwickshire Bike Ride on May 10th. There is a 16 mile course for those of you at the start of your cycling experience or for those of you that are more practiced then the 32 mile course will be no problem.
Although this is a British Heart Foundation organised event, we have been invited to participate and raise funds for The Platelet Charity as well.
Genotyping and Phenotyping of Platelets
The University of Birmingham is hosting a talk on a recent project that has been undertaken across a number of research units on the Genotyping and Phenotyping of Plateletlets (GAPP). Patients will hear from the consultants on their findings and the importance of continuing this work to identify more about Platelet Function Disorders (PFDs)
GAPP Patient Talk
Whilst the nation was queuing to vote in last nights election, a number of families were attending a talk at Birmingham University on a recent research project that they had been involved in. Genotyping and Phenotyping of Platelets – or GAPP for short is a research group based in Birmingham, Bristol and Sheffield who are working together to research patients who have problems with bleeding and may have a problem with their platelets.
The Pembrokeshire Tour
Well done to Alex Murray for completing The Pembrokeshire Tour. Raising awareness for Platelet Function Disorders as you go…….
World Haemophilia Day - April 17th
Joining the Haemophilia SouthernNetwork Team on April 17th at Hampshire Hospitals Foundation Trust. All dressed in red!
GOSH - What a Party
One of the party goers at the Great Ormond Street Spring Party. What a fab afternoon. Thanks to all the families who attended.
Trustee is Keynote Speaker
Prof Steve Watson has been invited as the keynote speaker at the 2015 Hemostasis and Thrombosis Research Society Symposium in New Orleans