Make your own free website on
My name is Helen Tomlinson and I am writing to ask for your assistance in
saving children around the world.  This can be accomplished without cost to
you.  I beg for a moment of your time to explain how.

The Hospital For Sick Children in Toronto, Canada is diligently researching
a rare genetic disease called Lafora Body Disease, which  my son and other
children around the world have.  This is an aggressive disease in humans
and typically strikes children aged 15-18.  It is characterized by
seizures, dementia and death in 2-10 years with an average of 5 years

In less than 2 years my son (age 19) has progressed from a normal, happy
and outgoing teenager who loved to sail, drive and fly an aeroplane to a
child who can barely talk or walk.  His twitching/jerking (myoclonus)
sometimes causes him to fall at random and he has broken his legs twice as
a result.  He has multiple seizures and severe cognitive impairment.  He
has great difficulty understanding or communicating, eating, swallowing or
caring for himself in any way.

In 1998, Dr. Berge Minassian and colleagues at the Hospital for Sick
Children discovered one of the genes responsible for Lafora.  They are
actively seeking the second.

How can you help?  You have a unique opportunity to help us.  Some dogs of
the Miniature Wirehaired Dachshunds breed, only in the UK, have been found
to naturally possess the second Lafora's disease gene.  If you would be
willing for blood to be obtained from some of your dogs for genetic testing
this would greatly enhance the possiblity of information leading to a cure
for our children and would also enable you to immediately locate and
isolate any dogs carrying this gene from breeding.  This information would
not be made public or impact your business in any way.

To locate individual dogs carrying the gene or any of their siblings, or to
attempt to raise generations of diseased animals to be tested in the future
requires more time than our children have.  Will you help us?

If you would like more information and/or would be willing to assist us
with some simple blood tests from affected animals at no cost to you,
please contact Dr. Berge Minassian at or Mike Vervoort
at  You may also contact Dr. Minassian at:  The
Hospital for Sick Children, 555 University Avenue, Toronto, Ontario,
Canada, M5G 1X8, or on telephone (416)813-6291.

Thanks so much for your consideration of this request.  You can make a

Helen Tomlinson for the Lafora Mums
Nebraska, USA

Back to letter one