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It's hard to believe that our family has twice dealt with ALS and not from familial genetics. My Aunt Geri who lived in Toronto died in 1990 not long after she turned the corner on age 60. We thought then of how unfair it was to have this wonderful woman taken from us at such a young age. She was my mother's younger sister.

Now my 39-year-old niece, Kairit Krikk, who lives in a small rural area of Estonia, the smallest of the three Baltic States, has been diagnosed with ALS. She is the youngest of three daughters of my half-sister, Aino Krikk.

It is heartbreaking that this beautiful and talented artist can no longer express her creativity through her painting. There are absolutely no support services in Estonia. Kairit wants to try stem cell treatment in Germany but is realistic that such treatment has not yet proved a lifesaver. Still, when there's nothing at all to offer, sometimes it feels good to try something rather than nothing at all.

The Leek family spurned on by one of Kairit's sisters, raised some money for Kairit's care in Estonia. It prompted us to think that perhaps we could do more in the way of raising awareness of ALS and ultimately promoting research.

The idea is to raise a significant amount of funds (our goal is $250,000) via the internet, social networking, and events, in order to host an international research symposium where we can bring together the best and the brightest minds from across the board and around the world.

The hope is that together, they can come up with ideas to further therapeutic treatments that, if not a cure, can stop the progress of the motor neuron disease as soon as possible. The research goals that come out of the symposium will also be funded by The Leek Family Fund.

"This disease is a toughie. Right now, it's hopeless. While we all need hope, hope is not a strategy. Fundraising for a cure is," said Jim Barber, Co-Chair of the California ALS Advocacy Committee and a member of the California ALS Research Committee.

"A think tank weekend on multidisciplinary approaches to ALS is a wonderful and effective idea," said Marie Csete, M.D., Ph.D., and Exec VP of Research & Development at Organovo in San Diego. "The research agenda for difficult problems like ALS takes input from scientists of many disciplines, and since scientists are so specialized, the face time is the only way to facilitate communication."

So, here we go! Let's raise this money and get these minds together to help Kairit and all those around the world living with ALS.

I will be tracking our efforts and following Kairit's journey as we head to Germany in early March for stem cell treatments and as we continue the fight for a cure. To read about it and see videos and photos, which will be regularly updated, please follow my blog -- ALS: a family's battle for a cure. (http://cureforkairit.blogspot.com).