Statement Of Julie Noonan Lawson
Alzheimer Advocate
East Sandwhich, Massachusetts

Presented to the Bipartisan Congressional Task Force On Alzheimer’s Disease

May 3, 2005

I am truly honored to have the opportunity to speak with you today; however, it is with a sundry of emotions that I tell you my story for it is ten years ago almost to the month that my dear belated sister, Francis Noonan Powers spoke to you herself as an Alzheimer’s disease patient. I am Julie Noonan Lawson one of the ten children born to Julia Noonan who left us a legacy of Alzheimer’s disease.

In 1967, with my mother’s diagnosis of Alzheimer’s Disease, came the answer to much confusion in our lives. Julia and her identical twin, Agnes, were born in 1924 in Agawam, Massachusetts. Julia married her high school sweetheart and settled down to raise a family; little did she know that her future would be quite different. With the birth of my last sibling in 1964, my mom had noticeably progressed to forgetting her responsibilities as a mother, wife and homemaker. She forgot to change diapers, to make meals, to pick children up from school. She lost my dad’s paycheck. Slowly, silently her love and ability to maintain a house disappeared.

Even though Mom was with us physically, her disappearing mind kept her from noticing what was going on for me or anyone else in the family. Confusion and fear were the prevailing emotions. Dad would get angry as he tried to rearrange the responsibilities of work and home. Uncertainty besieged his life as he questioned, "How could she forget her responsibilities like this?" These behaviors were so out of character for this young mother of ten who knew what it took to run a large household; she loved children and being a mom. This affected all us differently, but the common thread was the confusion that engulfed our lives.

In 1978, after many years in a nursing home, Mom died from complications of end stage Alzheimer's Disease. About this same time my mom’s identical twin, Agnes, started showing signs of Alzheimer’s disease; her battle was not as long as my mom’s because she died from complications of lung cancer in the early 1980’s.

Now two young families were left without mothers; we were left to pick up the pieces and move forward, as each of us adapted to life after Alzheimer’s disease had destroyed our families. With the death of my mom and aunt we thought our struggle with Alzheimer’s was finally over but we were wrong. In 1994 with Fran’s diagnosis of Alzheimer’s we realized our genetic legacy; each one of us was at a great risk of developing this genetic form of Alzheimer’s disease.

I speak to you today with first hand knowledge of the fear of losing my mind and of wondering at every turn if the actions I exhibit speak of a future with Alzheimer’s Disease. I live daily with knowing that this disease not only removes the many memories of a person’s mind but like a tornado, destroys all relationships in its path and changes the directions of those relationships for ever. Therefore, having lived almost my entire life gaining first hand knowledge of the destruction of Alzheimer’s Disease the thought of putting my own children through this was more than I could bear. Once the fear of getting the disease outweighed my ability to redirect my thoughts and the suspension of my life outweighed the enjoyment of living my life I knew it was time to find out if I was a carrier of the mutation. I thank God I am not a carrier, but sadly enough I have lost 4 family members to this disease. Besides mom and her twin sister, my sisters Maureen and Francis have lost the battle and we are in the process of losing my dear brother, Malcolm. In addition, we do not know who of the next generation is living with this time bomb.

This genetic legacy has had a different affect on each of us with the weight and responsibility of this genetic condition of Early-Onset Alzheimer’s Disease we have decided to band together to fight this disease. We have children and grandchildren who have inherited our genes and we don’t want for them the devastation of Alzheimer’s Disease. We want for them a life free of Alzheimer’s disease.

As a family we believe in the extreme need for research, we have participated in research at the National Institute of Health, as well as many other hospitals. Since 1997, the Noonan family has successfully organized the all volunteer Memory Ride, an annual bicycle ride which has raised over a half million dollars for Alzheimer’s research. We have recently teamed up with the Alzheimer's Association, in order to positively support the Nation’s need for a cure. Many of my family members that have been a part of the Memory Ride are with me today as they were ten years ago with my sister Fran.

As a family whose reality has been controlled by Alzheimer's Disease looking back over the past ten years we have gratitude for congress’s diligence in funding research, we are excited to see the advances in research, and to be able to contribute to them physically. Are you aware that in the year 2010 77 Million Baby boomers will begin retirement? Also in the year 2030, a mere 25 years from now, the senior population, which is the current baby boomers, will out number our school age children. Knowing these predictions and understanding that today’s cost of nursing home care is about fifty thousand dollars (50,000.00) annually this is not the time for congress to decrease funds for Alzheimer’s research. Right here and now we have the ability to make a difference for the future. We have been assured by many health care professionals that they are close to being able to stop the symptoms of Alzheimer's Disease, if not find a cure. With good reason, we are all concerned about Social Security, Medicaid and Medicare issues, but Alzheimer’s Disease will only hinder cost effective solutions to these pressing matters. We must find a cure; we must invest in this today. I ask that you increase funding to a billion dollars. From my vantage point, finding a cure, which is closer than it ever has been before, is a more sensible option than to pay for long term care for 77 million baby boomers.

My family members may be dwindling as a result of this vicious disease but our hope is for our future generations, and for a world without Alzheimer’s Disease.