Research & Money

Kairit' s lovely face framed by her newly cut hair lit up the computer screen via skype.  She had received the protein powders and other supplements I had sent that she credits for keeping her feeling healthy. Healthy --  but for ALS. I wish I could go to the holistic pharmacy and buy some product that would keep the progression of the muscle-wasting disease at bay or even reverse its effects. She has been taking the Imuran drug for several months now in the hope that she has not ALS but MMN, multi-focal motor neuropathy.  The Imuran thus far has only worked to weaken her immune system but the motor neurons do not have any more life than 4 months ago. If anything she is weaker. In another eight weeks, Kairit will have a follow-up with her doctor at Tartu University Hospital. Whether or not she continues the drug will then be determined.

It seems of late the ALS Association has sent several notices of progress made in identifying genes and mutations, and other findings but there has been no "AHA" moment.  As with so many diseases that still need treatment options and cures, money makes the difference in research. The cancer treatments and cures for some types of cancer have resulted from billions of dollars and many years of scientific research. ALS is underfunded because, quite frankly, fewer people get the disease...and most die rather quickly. It does not place the same strain on the healthcare system as other terminal illnesses. It only matters to the ALS patients, their loved ones, and those dedicated medical professionals and scientists who want to make a difference in caring for patients stricken with this terrible disease. Every disease is difficult but ALS seems particularly cruel  -- to keep the mind vital while the body wastes away.

If you have never experienced ALS with a loved one....or any friend or acquaintance...it is hard to imagine the depths of despair that set in when told there is no treatment and no cure. I have struggled for months now with my emotions. Kairit is too young and vital to let go. My aunt Geri, a fashionable and energetic woman in her early 60's, died just a year and half after her diagnosis. The two sides of the family are not genetically related...Kairit being the youngest daughter of my half-sister, Aino...and Geri was my mother's younger sister. I was not as connected to Geri's ill fate because I did not speak with her regularly on skype. Her smiling face did not reach across the seas...grab my heart...and cause me to pray for riches to come my way so we could put the money towards research into a cure for ALS.