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Conference News

Postponement of our face to face conference


As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for our families to meet in person, many of whom are shielding and being very careful.

The new dates will be the 24th and 25th April 2021. The conference will run from the Saturday morning to the Sunday afternoon. The venue will remain the same, the Crowne Plaza in Stratford upon Avon. If you have expressed a firm interest we will email you to confirm you would like to move that interest to next year.

However, we have opportunities to meet virtually.

Firstly, the BDFA will also hold its AGM and a virtual opportunity to meet up in the autumn (date TBC).

But before then we have the opportunity to join an ‘international’ online conference.


BDSRA online conference July 10-12 2020


We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online. The conference will be delivered by an app and will include the agenda, programs and sessions (pre-recorded and live) and contact and connection points. There will be a virtual exhibit hall, live link to the Memorial and more. The Batten disease organisations in Canada and Australia have also joined and it promises to be a really international experience.

As families, you can log in at or to sign up.

Families who sign up will receive a ‘conference box’ with a programme, t-shirts and other goodies for children and siblings to enjoy.

Please can anyone who signs up to the conference let the BDFA know by dropping us an email on, so we can send you out your conference box full of goodies!


We are very excited about this opportunity and we are looking forward to seeing how our US partners translate the conference to an online entity.

Any questions please ask and email or

Thank you for your amazing support, as always

The BDFA Team

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BDFA Financial and Organisation Update May 2020

We held a zoom meeting earlier this month to discuss the BDFA’s accounts (year-end August 2019) and we were joined by 11 parents as well as professionals working in the Batten arena. Thank you to everyone that attended.

Click  HERE on the link to go to the summary of the meeting.


The BDFA Team


Cancellation of AGM on 25th April 2020 Due to COVID-19

Dear all,
It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in April. We hope that you understand, in line with organisations with the current quickly changing situation with COVID-19, we have had to make this decision. The health and well being of our families and staff is paramount.

Therefore, on behalf of all of us at the BDFA, we would like to apologise for the cancellation, especially to those of you who have already made travel and accommodation plans. Unfortunately, these are circumstances which are beyond our control but we intend to re arrange the AGM for a later date and we hope you can join us then.

We have looked at whether we can hold the AGM remotely but our constitution doesn’t currently allow it. However, we will be arranging a zoom/skype call that families can join and we can then answer questions.

In the meantime, we are putting together a newsletter detailing the financial position of the BDFA and some of our plans going forward. We will give you further details of this soon.

Be assured that the BDFA is still open, staff are all working hard from home and we are here to support our families at this uncertain time.

If you need to contact either of our support officers, please don’t hesitate to contact Wendy or Cathy on
Or admin for other queries at
You can contact Amanda, our Chief Executive, at

Thankyou for all your on going support,
The BDFA Team

Join us as we celebrate love!

Notice of Annual General Meeting of the Batten Disease Family Association

Saturday 25th April 2020

NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held at 12pm on Saturday 25th April 2020 at the Davies Room, the Link Hotel, Ashby Road (A512), Loughborough, Leicestershire LE11 4EX.

The venue is fully accessible and the AGM will be followed by lunch. Parking is available on site at the hotel.

Sign up for tickets here-…

For more details on the location, please visit the hotels website-

A family fun day will be held from 10.30-3 on the same day with crafts and entertainment.

Please select tickets for all attendees for the event.


The following papers relate to the AGM 2017 – Click to view or download

Minutes of October 2016 AGM

Minutes of November 2017 AGM

2016/17 Report and Accounts

All Members are entitled to vote at the AGM. If you are unable to attend the AGM yourself, someone else may attend and vote. Alternatively, you may appoint a proxy to vote for you, using the attached proxy form. Your completed proxy form must be at our offices or sent by email to no later than 13.30 on Monday 13th November 2017.

If you would like to attend, please RSVP by Monday 14 November to Lucy Roose (phone 01252 416323 or email

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.