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Our vision is a world without Alzheimer's |
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      About the Noonan Family The Noonan Family Story The Noonan family, whose story was featured in PBS’s Emmy-winning series, “The Forgetting,” struggled with multiple cases of early-onset Alzheimer’s disease within their immediate family over several generations. Hoping to save other families from experiencing this devastation, the Noonan’s founded the Memory Ride for Alzheimer’s Research. Our mom, Julia, met our dad, a handsome NE diving champion, John Noonan at the local swimming pool. They married and settled in Stoughton, MA. The first of their ten children was born in 1942. Dad worked as a fireman and fire alarm technician to support our family. Mom loved being a mom and homemaker. She enjoyed our large family, laughed often, sang as she hung the never ending clothes on the clothesline, ice skated, played jump rope and board games with us. We were brought up in a "team work" home and cared for each other, helping with homework, housework and new babies. During the summer, we would often pack a picnic lunch, fill the car with friends and sing all the way to the beach to join cousins for the day or an overnight visit. In the early 1960s, Mom began forgetting and we’d tease her-everyone would laugh! Our youngest brother, the tenth child, was born in 1964. Although life was busy, mom loved having a new baby. But this time, Mom gradually showed signs of depression along with the forgetfulness. Dad took her to one doctor after another trying to find the cause and the cure. Chaos and confusion permeated the family. Mom was treated with different medications and in the spring of 1967, she had two series of shock treatments. In December of 1967, mom was admitted to the hospital. Dad and I heard they had eliminated every illness but a very rare senile condition called Alzheimer's disease (AD). Limited information in books noted that this disease affected identical twins. During all of this, there were still children at home-ages 3, 5, 9, 13, 16, 18 and 20. We began telling doctors and nurses about this very rare disease that would rob our mother of her mind and eventually leave her bedridden to die, but the process would take eight to thirteen years. What a blow for all of us. We were heartbroken! We were busy marrying, raising families and putting Alzheimer's disease behind us. In the 1980s mom's identical twin sister, Agnes, was diagnosed with AD and later died from lung cancer. In the late 1980s, our sister Maureen's forgetful nature and change in personality became obvious to some of us. About 1993, our sister Fran's forgetting became evident as well. Fran finally admitted she was forgetting, and we had come to terms that the "mind thief" was robbing us again of our hopes and dreams for Fran, her family and all our families. We were devastated. When Fran started showing symptoms of forgetfulness, Butch became very eager “to do something” and started contacting drug companies and doctors, which eventually led to our family being involved in research at Mass. General Hospital in Boston. Fran was diagnosed in 1995 and that year testified before the US Congress requesting funds for AD research with her husband, children and siblings by her side. In 1996, our family told our Alzheimer's story to the nation on ABC's 20/20. Different family members appeared on the Leeza Show, a segment of Channel 56 news, and have spoken at nursing homes, colleges and seminars. Pieces of our family story are part of the book, "Decoding Darkness, The Search for the Genetic Causes of Alzheimer's Disease" written by Dr. Rudolph Tanzi and Ann Parson. In 1997, Eryc and John decided that we should do a bike ride to raise funds for AD research. Siblings John, Butch and Bob were joined by Fran's son, Philip, and friend Chrys to cycle "The Berkshires to Boston Memory Ride". The other siblings (Julie, Fran, Patty, and other family and friends) joined the crew for the first "Memory Ride" -a three day cycle to the State House in Boston. Five cyclists and crew raised $11,000!! What a thrill for us to do something positive to promote awareness and raise funds for research! For one weekend, we were not victims! In 1997 the family met Dr. Kenneth Kosik, who became a friend and advocate for us during our years of growing and grieving. Ken became a part of family gatherings as the gene that continued to destroy our family was identified. Individual family members sought genetic counseling at NIH and adapted to the revelation, relief and heartbreak. We continue to grieve as we walk with others that will have the disease. In 1999 Maureen's husband and caretaker, Dick, died suddenly. Maureen's children gathered to grieve the loss of their dad and responsibility of their mom. Eventually, Maureen and children moved to Oregon. In 2000, the Noonan siblings, spouses and children began participating in research at the National Institute of Health in Washington, DC and at the same time, encouraged the staff at NIH to come and participate in the "Memory Ride" as bikers and crew. Dr. Gary Linker and staffers joined the ride for many years. In November 2001, Maureen died peacefully in Oregon and the same day, our sister, Kathi, died from cancer in North Carolina. After years of various nursing facilities, our sister Fran died in December 2003. And most recently after a long battle with Alzheimer’s disease our loving brother Butch died in November 2010. The Memory Ride changed to a two-day event from Brattleboro, VT to Boston. Gradually, the Noonan family was joined by Tom & Tree Harris, Deb & Alan Bachrach and other wonderful hard working volunteers. For ten years, the Memory Ride continued to be an all volunteer, non-profit organization to raise awareness and funds for AD research. The overhead was provided by corporate sponsors and staff families. Over $1,300,000.00 was raised for AD research. We are grateful that some of the grants from the Memory Ride have led researchers closer to finding the stop/cure. Bikers have come from all over the US to tell their stories, encourage one another and grieve together. We are grateful and hopeful that the Alzheimer's Association can grow the ride to raise even more funds for research as we long to see a world free from Alzheimer's Disease.
History of Memory Ride Year #1: 1997
Year #2: 1998
Year #3: 1999
Year #4: 2000
Year #5: 2001
Year #6: 2002
Year #7: 2003
Year #8: 2004
Year #9: 2005
Year #10: 2006
Year #11: 2007
Year #12: 2008
Year #13: 2009
Year #14: 2010
We look forward to the 2011 Memory Ride on July 23rd. Join us! |
Fear, frustration, and sadness overtook the family. Mom couldn't be left alone so dad hired people to sit with her and the young children. The three youngest children went to live with the three oldest married children and their families. The four remaining siblings helped take care of mom, and each other, while Dad worked. Mom was in and out of nursing homes. The facilities would call Dad saying they could no longer keep mom as she was aggressive or unsuitable for the care given by the facility. Dad would visit mom at the nursing home, come home and go into his bedroom; hours later coming out with his eyes all red from crying. Dad never talked about the loneliness, pain, fear and devastation. We all tried to "carry-on" as best we could. Mom was bedridden in a fetal position for her last five years and died at age 54 in 1978. We buried her and Alzheimer's disease (we thought). We grieved the gradual loss of mom and the destruction of AD from the early sixties to this very day.
Chapter Headquarters National Headquarters 24/7 Helpline: 1.800.272.3900 |
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