Millions of families have struggled for years, watching a loved one with Alzheimer's, Parkinson's, ALS, SPTAN 1 and other horrible neurological diseases, but not able to do very much to help them.
Through years of research, medical experts and scientists have been able to make great progress in helping people with other sicknesses, but unfortunately, not much with neurological diseases. That's why research is critical.
I recall my father and other Longshoremen contacting tuberculosis while working on the big unhealthy foreign freight ships and getting seriously sick. I also remember several of my friends afflicted with polio when I was a young boy. But thanks to medical research, great progress was made and people were able to go on and lead healthy, productive lives.
When we were first told that my own grandson, Braeden, was born with a rare undiagnosed neurological disease, which would affect his walking, speech and balance, we were devastated but determined. We took him everywhere for medical help, but tragically learned that there was no cure for his condition. We even took him to the National Institutes of Health (NIH) in Bethesda, Maryland, where he went through two solid weeks of exhaustive tests and physical examinations.
After several years, Braeden was diagnosed with SPTAN 1, but there's not yet a cure. The medical experts at the NIH said he is only one of six people in the world and one in two people in the United States to be diagnosed with this disease. Our extensive outreach to find medical help for him introduced me to the many other suffering heroic families who also haven't been able to find a cure for Autism and other neurological sicknesses.
My journey even resulted in me receiving an invitation from Pope Benedict XVI to attend the First World Conference on Adult Stem Cells, where I met and spent an entire week listening to and asking questions with many of the world's leading medical doctors and scientists at the Vatican. One renowned stem cell scientist I met, Christian Drapeau of Stemtech International, spent countless days and weeks explaining to me the myriad complexities of the brain, and the science and remarkable potential of stem cell nutrition.
Well, I have not stopped studying and searching for help for people like Braeden and others who have serious neurological problems. I have met some of the finest and caring medical people and scientists you could ever find in the world, including most recently Neuroscientist Dr. Dennis Steindler, Director of Tufts University Center for Aging. I've been told that government and private funding for medical research is critical if we're ever able to find medical help for these diseases. I was even asked to join the Board of Directors of the Pope John II Medical Research Institute in Iowa, who is working hard to advance the medical research and hope of Adult Stem Cell technology and nutrition.
But Sunday night at the JFK Library in Boston was certainly a moving and inspiring night for people and families searching for help for loved ones with Alzheimer's and other neurological diseases. We watched and heard a dramatic live presentation of a play entitled, Surviving Grace, featuring professional actors who performed the first act of the play with leading Congressional champion for medical research, U.S. Senator Ed Markey of Massachusetts. He narrated the part of a medical doctor. Following this outstanding and moving performance, we were able to talk with several renowned doctors, such as Dr. Reisa Sperling of Harvard Medical School and Senator Markey's wife, Dr. Susan Blumenthal. We all came away inspired, determined and motivated to continue our journey and fight to help find medical cures for these deadly and debilitating diseases.
But as I said to people there, "I personally consider trying to help Braeden and others with neurological diseases the most important job I ever had. And I'm confident that with good medical science and God, we will one day in the near future find a cure for these horrible diseases."
Yes, The JFK Library was definitely a place of hope Sunday night.