No words to describe this fabulous event, thank you to everyone who came and/or gave a donation to support us.
There was a lot of entertainment including a fun photo booth, silent auction (which included a holiday on a yacht and cooking courses with celebrities), green screen entertainment, guess the number of (kosher)sweets, cartoon flip book creations, a table magician plus an auction for several high-value concert tickets.
Prizes for the tombola and raffles were plenty.
- Hotel stay plus dinner and breakfast for two donated by The Village Hotel group
- Cineworld tickets donated by Chris O’Conner at Cineworld UK
- 5 silver name necklaces donated by LoveSilver
- Set of Eyelashes donated by Paulina Bennett
- Artisan chocolate donated by LeMare Chocolat
- Lawn Mower donated by Stuart Harris
- Jewish cookbook donated by The Book Warehouse
- An outdoor family photo-shoot in the park plus images AND 25% discount off all Bar/Batmitzvah packages donated by Graham Chweidan
- £200 gift voucher
- Several children toys donated by Cosy homeware, Golders Green
- Two £25 vouchers donated by Melange Restaurant
- Free trial at LA Fitness donated by LA fitness
- Several books donated by Waterstones
- Several portable chargers donated by Retouch Power
- Matzah plate donated by Jerusalem the Golden
- Night of babysitting donated by Honi Pein
- Mens Georgio Armani sunglass and a ladies Christian Dior sunglass
- One direction tickets
We are also grateful for the very generous pre-event donations from:
- Nick Doffman, Mishcon de Reya Solicitors
- Tirana and Jonathan Bloom
- Stephen Campbell
- Mr and Mrs David Strang
- Mark Lander
- Spencer Lester
- Charlene Blake
- Megan Hunjan
- David Earle
- Howard Weinberg
- Iain Blakeley
- Debbie Jedwab
- Philip Landan
- Simon Sheehan
And here was the fundraising speech by Dr Shara Cohen, the charity vice chair
Good evening, everyone! And thank you for being here. I’d just like to say a few words about why we’re here, and what I hope we can achieve together.
Most of you are here because you already know that Familial Dysautonomia is a serious problem and that knowledge puts you in a minority, a minority not only of the British population, but even within the Ashkenazi community where the disease is prevalent.
So I’m not going to spend too much time explaining what FD is and how it affects those who suffer from it, causing chronic disability and shortened lifespans though I will show a short film, that sheds a lot of light on that, a little bit later.
What I really want to focus on is not how awful the disease is but how we can all help make life better for the people who have it and those who care for them and to prevent it from affecting yet more lives.
The key to both of these goals is raising awareness.
The fact that so many people, even within the community, have never heard of FD , means that very few people even know if they carry the gene this means nothing is done to prevent the genes being paired if both parents are carriers.
This lack of awareness also means that, all too often the disease is not diagnosed in time causing unnecessary suffering for the child and terrible worry and anguish for the family.
The first step is to raise awareness of FD, so that everyone who could be carrying the gene makes sure they are screened.
Everyone in the Jewish community knows about Tay-Sachs disease and, the result of that awareness, is that it has been virtually eradicated within the UK.
Familial Dysautonomia has about the same incidence as Tay-Sachs so there’s no reason it shouldn’t be just as widely known with the same happy result of freeing the community of this disease.
At the very least, we want people who are carrying the FD gene to be able to make an informed choice regarding a pregnacny and new reproductive technology means there are many more options than there used to be.
In some orthodox communities, screening for genetic diseases is part of the match-making process so two potential parents with the gene would never get together in the first place and that’s certainly an effective way to prevent the disease but perhaps not for everyone
For those couples who discover they both have the gene, when they’ve decided to have a baby there is no need to despair
Ordinarily, there would be a one in four chance of their baby being born with FD but doctors can now use IVF and pre-implantation genetic diagnosis to ensure that the embryo is free of the gene before pregnancy begins both giving the parents peace of mind and, crucially, preventing the gene from being passed on to the next generation.
That’s fantastic news for the future but what about those families living with the disease now?
I’d now like to play the very short film I mentioned earlier which shows how one little boy and his family are coping with FD.
OK, what we have just seen, underlines what I’ve said about the importance of screening but it also shows just how debilitating the disease can be and that’s another reason we need to raise awareness so that FD is quickly diagnosed and children who have it, get the care they need as early as possible.
On that note, apart from raising awareness, another important goal of FDUK is to raise money to help the families of FD sufferers and to train medics and nurses in how to treat the disease because we don’t currently have any specialists here in the UK.
We are liaising with experts in the US to send British consultants over to learn from them and we also want to fund further research into the disease with the long-term goal of eradicating it completely.
And that’s why we’re all here!
So I hope you will give as generously as you can and encourage your friends and families to do the same to enable FDUK to make a real difference to the lives of those affected by the disease and help rid the community of FD once and for all.
Before I finish I would like to thank the ball committee who have made an enormous effort, both tonight and months before this event to give you ,what I hope will be a great evening
Jessica Harris, Molly Cohen, Yuval Ben-arzi and Madeliene Ferris
Who walks the streets. mostly in the rain, to get gift donations
Jane, Kristina, Astrid, Eliana and Ella
Who help with the set up for today
Karolina, Sue Harris and Simeon Cohen
Who help throughout the whole process
Leon, who amongst other things drove us everywhere and made beigles for the ball committee meetings
And big thank you to Honi Pein who has been my right-hand man on this
I’ll be more than happy to answer any questions you have individually over the course of the evening but in the meantime, thanks for listening please give generously
and have a great evening