The Saoirse Foundation was
formed to provide parents, families and all those affected by
Battens Disease on the Island of Ireland with a home based support
and networking organisation, and as importantly a credible source of
information.
The Saoirse Foundation was
formed by Tony & Mary Heffernan, who after finding out that their
daughter Saoirse had Battens Disease, searched for information and
support about Battens Disease, and found no Irish based organisation
providing what they needed. Saoirse, a Queen Bee in her own right,
Saoirse is solely responsible for the creation of the Bee for
Battens catch phrase. It just proves how such sick children can be
an inspiration for us all!
During the search for
information, contact was made with the Battens Disease Family
Association, in the
UK, whom is now one of the
affiliated charities to the Saoirse Foundation. They provided a
great service and support, and immediately the information started
to flow, including contact with other affected families in the UK and Ireland.
On March 2nd 2010,
The Heffernan family received more bad news when they found out that
their other child, Saoirse’s brother Liam was also diagnosed with
Battens Disease.
Friendships have developed and
with that came another founding family of the Charity, Alan & Shauna
Bates, from Derry, Northern Ireland also have a
daughter affected by Battens Disease. Rhiannon, a Queen Bee Like
Saoirse is now 9 ½ years old. Alan Bates, who created a short story
about life with Battens Disease was short listed on the BBC My Story
Documentary List.
http://www.bbc.co.uk/mystory/stories/144965/
The Goals of The Saoirse
Foundation are now clear, we will do what we have to do to try and
save those presently affected and find a cure for future
generations.
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On March 17th & 18th 2010, representatives from
European & International Battens Disease Patient Organisations met
in London for the first 2 day Conference ever held, which has become
a foundation block for a Global initiative for Treatment, Research
and information sharing Alliance.
Countries represented were, USA, Canada, New Zealand, UK, Australia,
South Africa, South America, Spain, Germany, , Denmark, Norway
Belgium & Ireland, Other mainland European Organisations were unable
to attend.
Charity Affiliations have
provided us with some more knowledge and support which assists us in
our goals. We will work closely with all charities applicable to the
promotion and care of persons with Battens Disease.
Battens Disease charities
include
Other Battens Disease
organisations exist worldwide; download the following document for
full details
World
List of Battens Disease associations.pdf
Right click on file and click on save link as
to save list to your computer
We have also created links
with a number of Irish Charities which can provide assistance to
those with Battens Disease in Ireland. These
include:
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