Can you help the Tatham- Keiser family with promising ALS reversal research ?
By Angela Keiser Schryver
What is ALS? Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that results in the death of nerve cells called motor neurons in the brain and spinal cord, these neurons control voluntary muscles. All patients eventually lose the ability to move and breathe on their own. Approximately 5,000 people in the U.S. are diagnosed with ALS each year, which averages to about 15 new cases each day. It is estimated that up to 20,000 Americans have the disease at any given time.
A person with ALS lives about two to five years from the time of diagnosis, some people can live with the disease for more than five years. More than half of all ALS patients live more than three years after diagnosis, 20 percent live five years or more, up to 10 percent live more than 10 years, and about five percent live 20 years or more. There is no cure for ALS.
Angela Keiser Schryver is part of a large loving family from Cuba NY. Her mother, Bonnie Tatham, was diagnosed six years ago and has not just survived but has been on the cutting edge of ALS research. Angela, a counselor at Bolivar-Richburg Elementary School, tells the story and why they are trying to raise money for research by Dr. Bedlack and team:
September 6th, 2018. A day I’ll never forget. I remember sitting in the doctor’s office at Cleveland Clinic, watching the doctor perform a series of tests on my mom. He checked her reflexes, I remember thinking, wow, her reflexes seem great, that has to be a good sign! It was a long day of tests and assessments. I could feel the anxiety building as we sat there nervously awaiting his diagnosis. If he confirmed PLC (Primary Lateral Sclerosis), I told myself it would be okay, things may get a little difficult down the road, but my mom would still be with us for years to come and we would be there to support her along her journey. The doctor finished typing up his notes, quietly turned, took a deep breath, and with a somber look on his face said, “I believe you have ALS, Bulbar-onset type.”
It was in that moment I felt my heart shatter and a million questions raced through my mind. She’s so healthy, extremely active, nothing like this runs in the family, how, just how could this possibly be the diagnosis for my mother, he had to be wrong. The doctor continued on, explaining how he had come to his diagnosis. I was only half hearing what he was saying as I sat there with so many thoughts racing through my mind. Three to five years is what I remember him saying, but he said that there were hopes of new treatments or drugs that may slow the progress in the near future. I knew in that moment I needed to be strong. I knew I could not let my mom see me fall apart because if I did, it would only make her upset. I needed to give her hope.
The years since her diagnosis have been a whirlwind. Watching someone you love steadily decline and lose the ability to do simple day to day tasks has been heart wrenching. My mother has gone from being able to do just about any physical task you can think of, from running a chainsaw to throwing hay in the back of a wagon to now having to rely on a walker and losing the ability to climb stairs. She was only 57 when she was diagnosed with ALS, she is now 62. Every three months she is assessed and we get the same message, she is a little weaker, and she has lost more strength in her arms and legs.
It has been five years since her diagnosis and even though she continues to decline we are luckier than most, she is still with us, and she can still function better than most who have this horrible disease. My mother is the strongest person I have ever known, and has an amazing support system. She has a loving, supportive husband, and five children, all with families that have given her several grandchildren. We are a close, supportive family and I think that helps give her the drive to fight this disease with all that she has.
Read more about Dr. Bedlack’s most recent research
In 2022, we were blessed to find Dr. Bedlack who specializes in treating ALS patients and has devoted his life to ALS research to find a cure. He has given my mom more hope than any other doctor she has received care from. He is passionate about his work and is determined to make a difference in the world of people living with ALS. He and his team have been studying outliers, including a small group (61) who appear to have had ALS and then recovered from it. They recently discovered that several of these “ALS Reversals” have a genetic mutation that may reduce the amount of a specific protein they produce (IGFBP7). This is highly unusual in people who do not recover from ALS. They have a theory that knocking down the amount of IGFBP7 protein could slow, stop or reverse ALS progression. They have a follow up study underway now which will hopefully support this theory. If so, then they will launch a trial targeting IGFBP7 in 2025. Unfortunately, the cost of these studies is high, and it is difficult to secure grants in the medical world, particularly for research based on outliers like this. Thus, we are asking you to consider making a donation to contribute to ALS research. One-hundred percent of the funds we raise will be directly donated to Dr. Bedlack at Duke University to help in his latest study to find a cure for ALS! Your donation could help save countless lives and prevent so much pain and suffering experienced from ALS for both patients and their families! Please join our family in this fight against ALS and help us give hope to others that are battling this devastating disease. If you are unable to donate please consider sharing this post to help raise more awareness of ALS!
