In April, Lisa attended a Federation of Master Builders Awards evening at a hotel in Oxford where she was presented with a cheque for £2,000 as a donation to the group to help us put on events for families. Such an incredible and overwhelming start to our fund raising activities.
Bestway Builders become our first sponsors and pay for t shirts for committee members and fund raisers. We are very grateful to them for their support and generous donation.
On April 17th Synergy Medical held a cake sale at their offices to celebrate World Haemophilia Day and raised £200 for our group. A big thank you to their team who made us feel very special by supporting us.
To mark the end of the week in which we had World Haemophilia Day in 2019, on a scorching Easter Saturday,
myself and some friends climbed to the summit of Mount Snowdon to raise money and awareness for the Local
Families with Bleeding Disorders group.
After a year of tests and worry about bruising, our little boy was diagnosed with severe heamophilia B at the end of 2017. Thrust into the world of bleeding disorders, the local bleeding disorders community became a lifeline of support and advice.
So why Snowdon? Well, I'm pretty rubbish with heights, but I wanted to show my children that anything is possible with the right mindset and encouragement. The sense of achievement was fantastic, and the reward of a Snowdon ale at the foot of the mountain made the descent much quicker than the climb!
We are really excited to have been accepted as part of the Genetic Disorders UK Partnership Network. This means we will be able to hold charity events to support GDUK and gain greater awareness of our group via their website and network. You can see our group listed here.
I decided to dedicate myself to doing a cake sale and a raffle at Lenny's school to raise money for this group as in the past, I've not known of anyone with haemophilia. Lenny's response to me fundraising was the best. He said "Mummy you always tell me you are proud of me" so with that, I started to organise more fund raising. After my first fund raiser, I was introduced to this group, and what an amazing group this is, offering support, friendships and also, Lenny realising that he is not the only boy to have haemophilia. So, for my second fundraiser, I did a cake sale and a raffle for Lenny's whole school... We raised an amazing £1,060!!!!!
Lisa went to speak to the weekly meeting to raise awareness of the group and also bleeding disorders. They were very welcoming, really engaged with our story and agreed that they had learned about things they did not know about before around bleeding disorders. They kindly took Lisa for drinks and dinner after and have enouraged her to attend more Rotary Club meetings in the area as they believe our story is such an important one.
Amanda Nercessian Keysell put our group forward for her son's primary schools nominated charity scheme. Over 100 charities applied for just two places and we have been shortlisted to the last four. This is incredible new. We will find out if we have been chosen next week.
We launched phase one of our website. Working with Darren (RaynerRayner Photography), we have been able to launch a website with some great content about our group and the families that make this such an incredible community.
Us as a family are really looking forward to our school summer fair.
As a family we have made lots of hampers to sell at our summer fair, including a lucky dip for all the children.
Doing fund raising brings us as a family close together and we enjoy giving back x
** Update ** - Michelle and family raised over £320 at the fair - amazing news!
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.