News - September 2019

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 Local Families with Bleeding Disorders 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.

The event managed to raise £100.50.

A kind neighbour of one of the members ran the Bedford Half Marathon on the 6th September to raise awareness about our support group and show their support for Jacob and his friends in the group.

The Communications Sub Committee had their first meeting today. Lisa, Anna and Kelly developed a content calendar for the year ahead thinking about how best to use our various social media platforms to meet the objectives of our group and engage the different groups within our community including members, families and even potential sponsors and volunteers.

The Committee meeting this month saw the launch of our new committee structure with each member taking a lead in either communications, event management or fundraising. This is a great step forward for our committee as we now have in place a fantastic group of volunteers each with their own goals and objectives. We really are in great shape for achieving our business strategy of making sure no family ever feels alone with their bleeding disorder through our events, fund raising and social media platforms.

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 £8500 and we would really like to hit the £10,000 mark in the near future.

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.

Collection in playground at school raised £115 for Jean's for genes (50 percent will go directly to this group once processed by Jean's for genes)

Henry's school fully got behind Jeans for Genes day. For the whole week we asked children, parents and carers to name the teddy for a donation, the winning name was then drawn out of the hat at the assembly. Ted's name is Fluffy - a hugely delighted 10 year old went home with Fluffy, much to her Mum's joy!
Then on the Friday all the children could come to school wearing Jeans for 50p. Henry, his friends and the whole school had great fun.
Henry wrote in his school newsletter: "Lots of people have been incredibly generous with their donations. I am wordless! I helped to count the money at lunchtime today and we have already raised £324.31! Thank you to my friends Jimmy, Stanley, Daniel and many more who have helped me. Thanks to my mum, who has been really supportive."

We held out first big social event today with a trip for over 100 of our members, that's 22 families to London Zoo. We had a fantastic day with both children and parents making new friends, sharing advice and experiences and just having a great time. In the words of one of our members who joined us, "Seeing the children playing happily together and enjoying a wonderful day out, not burdened by their conditions. Also great to meet other parents, share stories and help people understand that they are not alone in this and that others are living through it (and thriving through it!)". So why not join our group. One of our members says this on becoming a member "Chance for kids to mix with others and make lifelong friends - not feel alone with their bleeding disorder. Chance to mix with other families going through similar situations - chance to support each other and inform each other.

Lisa will be attending the Radnor House Charities Assembly on 24th September where she will present the work and objectives of our group to the full school. This is a great opportunity for us to spread awareness about bleeding disorders and also, tell this fantastic school that has chosen to support us for this academic year, how our families support each other through our social and educational events.

A really big step in the development and growth of Local Families with Bleeding Disorders as today, we welcomed our 100th member into the Facebook group. This is astonishing and something we are very proud of given our launch only 6 months ago!