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On this
page you find links to other important SSPE related websites.
SSPE association
"Jaxon's Cure", USA
Jaxon is a 7-year-old boy who is suffering from SSPE just like Maxi.
He
lives in Port Orchard, Washington State, USA. In the summer of 2007,
just over
a year
after Jaxon showing first symptoms of the desease, his parents and an
outstanding
group of friends and relatives got together and formed a non-profit
organization that
was named Jaxon’s Cure. In July of 2007 it
was incorporated
in the State of
Washington.
Jaxon's Cure purpose is to find
a cure for Jaxon and other children worldwide with
SSPE by directing
funds raised towards research, cure development and awareness
on all
issues related to SSPE.
Maxi's family is in close contact with Jaxon's parents. We exchange
information and
experiences, especially on alternative or innovative treatment methods
and function
as the "bridgehead" to the SSPE organization in Istanbul, Turkey.
22 Nov 2008:
Following an unexpected acute
deterioration of his condition, Jaxon passed away
on October 6, 2008. He was no
older than 8 years...
Jaxon's family is in our thoughts and prayers. In a desperate effort to
somehow help
saving Jaxon's life, we had been in close touch during Jaxon's last
days to establish
contacts to the SSPE specialists in Turkey and exchange all available
information.
Unfortunately in vain..
SSPE
association
"SSPEDERNEGI" Istanbul, Turkey
Update under
way...