Cure Alveolar Soft Part Sarcoma International (iCureASPS)

It's truly a tragedy. Especially considering Jussi & family did pretty much everything that could have possibly been done.

He tried many things, and has advanced our understanding by his example. He was always nice to talk to. It was a long journey for him. At least his suffering is also finished now.. We have lost one of our very own.

I totally believe that if he had a less aggressive strain of the disease - like mine - he would have kept alive for many years to come. It was bad luck, and unfortunately nothing could be done about this at our level of scientific understanding and technological and medical development :(

While reading Jussi’s Facebook page , I came across a beautiful video posted by a friend who appears to been a true friend of Jussi’s. : )
I asked his permission to share this very appropriate video that so eloquently describes Jussi and his journey .
From beginning days then to his final days.

I want to thank Jussi’s friend for this beautiful summary of our friend .

https://m.youtube.com/watch?v=q8ir8rVl2Z4&feature=share

Thank you for your special post Ivan. Truly, all that love and current medical science could do were done for dear Jussi, but tragically the ravages of this evil disease overcame all of the love and medical treatments to defeat his precious body, but the disease never defeated his invincible spirit His body is now victoriously free of ASPS and all of the suffering and pain that he SO courageously endured, and his bright spirit Lives on for eternity. With a broken heart filled with deepest shared sorrow, Bonni

Ivan , Olga , Bonni and certainly all,
My extended hugs , as this is truly a very very difficult time .
Love

Thank you dear Debbie, Jussi's tragic loss affects us all especially hard as he had a very special and deeply valued presence in our ASPS Community through his faithful posts and gracious sharing. His death is a devastating reminder to all of us of the harsh reality of this insidious disease. Life is SO VERY fragile and unpredictable, and tomorrow is guaranteed to no one, but even more so with ASPS. We must all try to remain strong, and to continue the battle which dear Jussi fought with such immense courage and determination. His legacy Lives on, and will be a source of great inspiration for those of us still fighting this cruel and challenging disease. Heart to heart with special caring thoughts and continued Hope, Bonni

Mikko,
I'm sorry for your lost...
Jussi is such a brave and proactive fighter. He will be missed...