Charity

Managing Directors Appeal Speach

Off

Earlier this year, our managing director, Dr Shara Cohen, who is also co-chair of the charity FD-UK gave an apeal speach at the charities annual teardrop ball.  Below is a copy of the speach.  You can donate to this charity via Just Giving

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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.

…….FILM

 

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

 

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