1st July 2019 - Parklane Scaffolding become our newest sponsors
Parklane Scaffolding - become our newest sponsors with a £200 donation to our local group. Based in Wallington they understand how important groups like ours are in supporting local families with similar health challenges. A big thank you to them for their support.
4th July 2019 - Announced as Radnor House School in Twickenham's preferred Local Support Group
Today, we were informed by Radnor House School in Twickenham that we have been selected as their preferred local group to support for the next academic year. This is incredible news. We were chosen from over 100 national and local charities. Only one national and one local group are chosen so, this is an amazing achievement. This will raise the profile of bleeding disorders and our group amongst a huge community as well as help raise vital funds toward putting on events to bring our families closer together. A big thank you to Amanda Nercessian Keysell for putting our name forward and supporting our application.
15th July 2019 - Starting Nursery & School event
We had our first educational event in the Isle of Dogs with the theme being Starting School and Nursery. The event was well attended by some new and regular members as well as a good representation from the committee. We had a talk from Christina Burgess on well being and a great Press Conference from our Young Expert Panellists. Click here for more information about the day courtesy of our news reporter Viola Aslaner.
16th July 2019 - Committee Meeting
The committee had their second meeting last night. It was a really long meeting with so many exciting things to talk about including upcoming competitions, events, website developments, grant applications, fund raising, awareness raising campaigns, promotional materials, event booking systems, GDUK and Jeans 4 Genes day events and even registering to become a charity!
17th July 2019 - Shire Pharamceutical Literature
The pharamceutical company Shire have provided us with some great literature about learning to self infuse and what it all means to live a life involving self treatment at home.
17th July 2019 - Local Familes with Bleeding Disorders - Awareness Campaign
We launched an awareness raising campaign asking all members to change their Facebook profile picture to our group logo in return for a free car sticker to promote our name even further.
21st July 2019 - Michelle and Family Car Boot Sale
Michelle and Matt Bibby run a stall with their children at their local car boot sale raising not only awareness among the locals but also, £100 for the group. Big thank you to them all for all their hard work on the day and leading up to it.
22nd July 2019 - Michelle Bibby has agreed to join the Committee
Michelle Bibby has agreed to join the Committee taking on the challenge of fund raising for the group. She has already achieved over £1,500 in donations to the group and has had some great fund raising ideas so this job is certainly perfect for her. Welcome aboard Michelle. We all look forward to working with you more in the future.
28th July 2019 - Lisa annual garden party raises £740
Lisa and her family held their garden party for friends, family and neighbours on Sunday. After a full day of baking in the Saturday, over 40 people came along to support our local group whilst having a great time chatting and laughing and enjoying each other's company. Lisa's friend Jan made jam to sell to help raise funds and several friends brought along homemade cakes. They raised an incredible £740 to help this group continue to put on events for families living with bleeding disorders.
15th August 2019 - Music Workshop Offer
Mark Baker, dad of Theo who you may remember from our recent bloopers videos, is a musician and guitar tutor.
He has very kindly offered to run a music workshop with some of the children from our group, potentially from his home studio in Hampton or, from another venue depending on numbers.
Mark wants to give something of his time and experience to this group to bring the children together to work on a creative project together as a team.
They don't need to be musically talented already to take part but, if we do have any keen singers or musicians out there, it would be great to have them on board to share their skills.
Mark will teach some basics about music and simple song writing rules. Using his computer, keyboard and speakers, the idea is that the group will be able to build some musical ideas together, potentially even write a song.... possibly one about haemophilia. How cool would that be, to have our own theme tune written by our younger members.
We may even video the session to create a music video to go along side any possible outputs. But let’s not get too carried away with this for now!
At this stage, we are looking for some feedback and level of interest in this opportunity. It would be held on a Sunday and would probably be for about three hours.
If you are interested, please let myself and Mark know by posting below so that we can then start to think about possible dates and venues.
I would like to thank Mark for offering us his time and expertise. I think this is a great opportunity for our group to do something a little different and maybe even produce something we can be proud of.
Contact Us for more inforamtion.
15th August 2019 - Synergy Medical Meeting
Anna and Lisa has a great meeting with Kelly from synergy medical last week. We spent some time developing our communications plan. We talked about how we could make Facebook, Instagram, Twitter, linked in and our website all work together to ensure we communicate consistent messages to different target audiences. Also to ensure we have good material to talk about to the various audiences each month.
17th August 2019 - Nicola BBQ
Nicola and her family had a great day at their summer BBQ yesterday or as Jacob likes to call it "his haemophilia party". They had a lot of fun eating, drinking, laughing, holding their silent auction, selling raffle tickets and of course raising awareness and funds. They raised £471 and even managed to recruit a kind friend who had offered to raise funds for our group at his next 20k run! What an incredible day. Thanks to the Green Family.
29th August 2019 - Starting School - Hints and Tips
We held our first webinar last night to support those families within our group that are about to send off their little ones to school for the first time. It was a great session using a presentation built from hints, tips and advice shared by many of our members who have already faced this challenge. Another first for our group which was very successful with some great feedback.
1st September 2019 - Local families with bleeding disorders recruits Kelly Bellamy as our Communications Consultant
We are really excited to welcome Kelly to the team. Kelly first got involved with our group when she organised a
World Haemophilia Day cake sale this year in order to help raise funds towards our LondonZoo trip. Since helping us,
Kelly has now kindly agreed to share her expertise in healthcare communications and event planning with us by
volunteering with us.
Kelly is Senior Director at a local Medical Communications agency in Richmond, and it's through this work that
she has formed links with the haemophilia community, having worked with different societies, groups, and companies
all over the world for almost 13 years.
As Kelly's background is in communications, she is getting involved to help us with some of our communications,
and how we can use social media and other platforms in the most effective way. Though she does work with the
pharmaceutical industry in a professional capacity, she is volunteering with the group independently - and is
really excited to be able to help!
2nd September 2019 - Charity Poker Challenge [8pm]
On Monday night in a packed South London pub the long awaited heads up poker tournament got under way -
playing on behalf of Families with bleeding orders was Danny and the opposition was some unknown
who will remain nameless for reasons that will become obvious! After three close run rounds over three hours of play,
Danny emerged winner with a 2-1 victory winning both players stakes for the charity.
Exact amount raised is TBC as donations are still pending.
17th September 2019 - Hannah will be running a coffee morning
Cake, coffee and a good natter with friends to raise some money for our group. Jake really benefits from us being able to talk to him about other little boys who are just like him, so this group has been invaluable. We will hopefully be putting on a raffle and a few other things to help with donations. Since Jake was diagnosed we've raised £8,500 and we would really like to hit the £10,000 mark in the near future.
20th September 2019 - Jeans for Genes Day Event
On Friday 20th September, Carreen McKay will be holding an event at her primary school to raise awareness of bleeding disorders and funds for both the Genetic Disorders Uk charity and Local Families with bleeding disorders.
Friday 20th September 2019 - Jeans for Genes Day at School
Hannah Brunning will be holding a Jeans 4 Genes Day event at her school. All the teachers wear jeans to raise funds for Jeans for Genes day and this year, they will be donating the money raised to GDUK and our group along with a collection being held in the school playground.
21st September 2019 - Anne Marie will be holding her annual coffee morning
Anne Marie will be holding her annual coffee morning event for friends and family to raise
awareness about bleeding disorders and our group as well as some funds for future events.
Anne Marie is an excellent baker and cake decorator extraordinaire so we are all very excited
to see the cakes she produces!
24th October 2019 - Hannah will be going to talk to her local Rotary Club about our group
I've been invited to speak about Haemophilia at Walton on Thames, Surrey, Rotary Club on 24th October 2019. The talk will be entitled 'Life with Haemophilia' and I will speak abit about our group as well. They will give a donation to the group following the talk.