My heart is breaking for my half-sister, Aino Krikk. She has already lived through so much pain in her life. Her father (my father) was forced to leave his first family behind during WWII when the Soviet army marched into Estonia in September, 1944. Had he not left at the urging of his wife (Aino's mother) the entire family may have been killed instantly or perished in Siberia. Aino and her three brothers and mother were led to believe that Paul Leek had died when his documents and wedding ring were found the nest day. Years later in 1962 they learned that he had remarried and lived in Toronto, Canada. Aino felt great sadness and feelings of abandonment by her father....and life in an occupied homeland under communist rule was hard and dark. But nothing can compare to watching her youngest daughter, 39-year-old Kairit,, on death's march with a disease in which muscles waste away. It is as if one's heart is whipped every day.
I spoke with Kairit this morning. Her disposition remains stable but her body is not. She is getting weaker. She is losing her ability to walk, even awkwardly. Her hands are weaker. The February stem cell treatment gave her a shot of optimism, but it did not have all of the right ingredients. I watched an episode of Charlie Rose that dealt with inventions and science. He quoted Einstein who said something like "If you ask the right question, you have 95% of the answer. " What is the right question about ALS? What is the answer?
I told Kairit about the event held this past Saturday at the Century Plaza Hotel, a fundraiser for the ALS Association that honored some notables in the fight against ALS. They included actress and ALS celebrity spokeswoman Kate Linder, whose brother-in-law had ALS; Jim Barber, an ALS patient and attorney who advocates with great success for patient rights; Dean Rasmussen, whose father had ALS, who is a tireless advocate, generous benefactor and meaningful fundraiser, and Dr. Clive Svendsen, PH.D, who is the Director of Regenerative Medicine at Cedars Sinai Medical Center that provides ALS care and research into the cause, treatment, prevention and cure for ALS. Dr. Svendsen illustrated with the use of slides the exciting promise of stem cell research for treatment of ALS.
I shout, "Hurry up, hurry up!"
I had the good fortune to sit next to a doctor working with Cambria, a pharmaceutical company that is developing a drug for ALS. It is not a cure but one that has shown in mouse studies to prolong life longer than Rilutek, the only drug currently available. Clinical trials are next.
I shout, "Hurry up, hurry up!"
I know, of course, that science does not hurry up. Sometimes there are "aha" moments that lead to further results but it's generally a long and tedious road, especially when it involves the NIH, the FDA, or any government institution. On one hand, they protect. On the other, they hold back on the side of safety. One death in a clinical trial, even if the patient was at death's door, can set back progress by years. In a world where just about everything is rushing at us at warp speed, cures for diseases seem to be in analog.
I shout, "Hurry up, hurry up!"
I spoke with Kairit this morning. Her disposition remains stable but her body is not. She is getting weaker. She is losing her ability to walk, even awkwardly. Her hands are weaker. The February stem cell treatment gave her a shot of optimism, but it did not have all of the right ingredients. I watched an episode of Charlie Rose that dealt with inventions and science. He quoted Einstein who said something like "If you ask the right question, you have 95% of the answer. " What is the right question about ALS? What is the answer?
I told Kairit about the event held this past Saturday at the Century Plaza Hotel, a fundraiser for the ALS Association that honored some notables in the fight against ALS. They included actress and ALS celebrity spokeswoman Kate Linder, whose brother-in-law had ALS; Jim Barber, an ALS patient and attorney who advocates with great success for patient rights; Dean Rasmussen, whose father had ALS, who is a tireless advocate, generous benefactor and meaningful fundraiser, and Dr. Clive Svendsen, PH.D, who is the Director of Regenerative Medicine at Cedars Sinai Medical Center that provides ALS care and research into the cause, treatment, prevention and cure for ALS. Dr. Svendsen illustrated with the use of slides the exciting promise of stem cell research for treatment of ALS.
I shout, "Hurry up, hurry up!"
I had the good fortune to sit next to a doctor working with Cambria, a pharmaceutical company that is developing a drug for ALS. It is not a cure but one that has shown in mouse studies to prolong life longer than Rilutek, the only drug currently available. Clinical trials are next.
I shout, "Hurry up, hurry up!"
I know, of course, that science does not hurry up. Sometimes there are "aha" moments that lead to further results but it's generally a long and tedious road, especially when it involves the NIH, the FDA, or any government institution. On one hand, they protect. On the other, they hold back on the side of safety. One death in a clinical trial, even if the patient was at death's door, can set back progress by years. In a world where just about everything is rushing at us at warp speed, cures for diseases seem to be in analog.
I shout, "Hurry up, hurry up!"
