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Dear Friend

Welcome to the latest newsletter from the Batten Disease Family Association. It is the first since I joined as Chief Executive in May and it’s full of news and reminiscences as this year is BDFA’s 20th anniversary.  Please follow the link to our website above to download a copy and let us know if you would like us to send you a hard copy as well.

This is a great milestone to have achieved. Much has been accomplished during those 20 years and there is a lot to be proud of. Everyone at BDFA knows that there is more to be done, until a cure is found.

It is disappointing in this year of celebration to have to let you know that the BDFA has experienced a drop in income this current financial year. The Board and staff are taking all the steps we can to ensure that the services we offer are maintained. I realise that this is unsettling news and want to assure you that the needs of our families and children are our main concern. We know that many of you hold the BDFA close to your hearts and would like to ask for your support in resolving this situation.

In the next couple of weeks, you will receive information about our new summer fundraising campaign. It would be great if you could involve your family and friends in raising as much money as possible please.
That will be with you shortly.

If, in the meantime, you would like to make a donation please do visit our website and follow the instructions on the “donate” button. You can make a single donation or set up a regular gift through PayPal using that button. If you prefer not to use PayPal and would like to make a donation, please contact the office (01252 416323 or by email If you wish to send a cheque, please make it payable to ‘Batten Disease Family Association’ and send it to:  BDFA, The Old Library, 4 Boundary Road, Farnborough GU14 6SF.

I know that the Board and staff of BDFA are determined to get back on track so we can achieve even more for all those affected by Batten disease.
All best wishes

Samantha Barber

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