On October 14th of 2014
heart of our brave girl stopped beating.
THANK YOU DARLING
It was always easy
to love you.
It’s in human nature
to love everything that has beauty
Outer beauty
Inner beauty
And beautiful is
that which is dear and precious.
What is dear comes with love,
And unconditional love is rare.
It is said that only
a mother’s love is unconditional.
You were not a mother,
But you had unconditional love
For everyone.


Click here to read the whole poem >>

Let us beat Lafora


THE ONLY MEANING OF EVERY HUMAN LIFE IS TO FIGHT, VICTORY OR DEFEAT IS IN GOD’S HAND


Light at the end of the tunnel:
On April 28th 2011, Professor Minassian and his team have published a work confirming them to be on the right way towards a final resolution of the Lafora disease.
The complete work can be read on the page – News.

Here is just an important part of the abstract:
«Here we remove PTG, one of the proteins that target PP1 to glycogen, from mice with Lafora disease. This results in near-complete disappearance of polyglucosans and in resolution of neurodegeneration and myoclonic epilepsy. This work discloses an entryway to treating this fatal epilepsy and potentially other glycogen storage diseases.»
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Until the end of year 2014. Professor Minassian’s research team at the SickKids Clinic in Toronto has received donations from our family, friends and people of good will, in a total amount of 460.000,00 EUR

                                             

A healthy, beautiful and noble teenage girl, being in the age most of us would define as the best in life, a sudden cruel destiny („a genetic lottery“) introduces her into a most cruel life stories, named LAFORA.
With the sentence "Mom, what’s happening to me, I forgot how to walk…"she is entering into a quiet tragedy and agony that should, with all its cruelty, last for maximum 10 years, having a fatal ending.
The mother of a girl from USA, Linda Gerber, said: "In life, you never know, on Monday you think you have two beautiful and smart kids and on Tuesday your life has headlong changed. For gods sake, that could have happened to anyone."

Imagine receiving one day a phone call from school, telling you that your daughter or son had some kind of seizure.
A long diagnostic procedure is following, looking for a worldly disease. On the end you find out there is no therapy for the disease, only a symptoms progression and deterioration of your child’s life up to the inescapable fatal outcome.
There are no words to describe what it’s like to watch your children suffer, decay and going a path of no return, while you are not able to change anything in its agony. Since this a rare disease, there are no financed researches, except those financed by parents, friends and people with a good will.
Researchers have found the genes responsible for this disease and believe to be on a good way in finding a medicine.

If we have more recruits in our army, there are better chances to beat this cruel LAFORA disease.
It is a race against time and how long it will last and who is going to win – the Lafora families or the Lafora disease, depends a lot on us.

DZES ARMIJA (Johanston):
"It is in human nature to fight alone, but once you realize that you are fighting against a great force, there are more chances if you have an army on your side."

Linda Gerber:
"Our children can die long before money arrives, we are trying to raise the conscience about the disease and gain as much money as possible NOW".

Helen Keller:
"Anyone of us can do so little, together we can do so much".

Unbelievable dreams lead to unbelievable results.
The only meaning of human life is to fight; victory or defeat is in god’s hands.