Ice Bucket Challenge Arrives in Estonia
The ice bucket challenge meme sweeping both sides of the Atlantic has even made it to Stenbock House.
Last week, Prime Minister Taavi Rõivas accepted the challenge, which is an fundraiser for research toward a cure for amyotrophic lateral sclerosis (ALS), a progressive and fatal motor neuron disease.
Among leaders past and present, he joined the ranks of former US President George W. Bush who had ice water dumped on them. US President Barack Obama declined, choosing the other option, to write a larger check; many people opt for both ice and a larger donation.
Rõivas was challenged by Tiina Shein, an Estonian PR director. On the giving end, Rõivas nominated singer Koit Toome, Interior Minister Hanno Pevkur and politician Kalle Palling. The video of the August 22 challenge is here.
Story of Uku Kuut
In Estonia, perhaps the best known individual currently battling motor neuron disease is funk producer Uku Kuut, the son of jazz singer Marju Kuut.
In an example of how little is known about the etiology of the disease, Kuut's diagnosis was complicated and delayed by the fact that he had also had Lyme disease and, possibly, tick-borne co-infections. Some researchers claim that a large number of ALS sufferers test positive for Lyme disease, though conventional medicine does not recognize a link as Lyme disease can itself "imitate" many diseases.
Although Kuut's disease is in an advanced stage, he and his wife have been active lobbying for more support for the disabled, particularly with the work ability reform currently pending. You can learn more about Kuut's music, growing wine grapes on Saaremaa and the reality for disabled people in Estonia in an ETV segment from April (in Estonian) here.
The Muscular Disorders Association is the main patients organization for muscular dystrophy and ALS.