John Cronin, co-founder of John’s Crazy Socks, returned to Boston this past weekend to continue his participation in a medical research study of people with Down syndrome. John met with doctors and research staff at Massachusetts General Hospital for a two-hour visit as part of an ongoing research study.
“I want to do this medical study because it helps scientists learn more about Down syndrome,” said John. “The more they learn, the more they can help people with Down syndrome.” John added, “I encourage more people with Down syndrome to join this study or other studies like it.”
The LIFE-DSR Medical Research Study
There are several studies of adults with Down syndrome taking place in the United States.
John has enrolled in the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR), a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.
John joined the LIFE-DSR study in the summer of 2022 and returned now for a follow up visit.
LIFE-DSR is an “observational” study. That means it does not test new medicines or therapies. Instead, researchers conduct basic physical exams and interviews to collect data that provides a fuller picture of the physiology of people with Down syndrome.
As people with Down syndrome live longer, the life expectancy has increased to 60 years of age – scientists want to learn more about the changes adults with Down syndrome experience as they age. In particular, researchers seek more information about Down syndrome and Alzheimer’s disease.
Thank You to the LuMind-IDSC Down Syndrome Foundation
John was introduced to the study by our friends and charity partner, LuMind-IDSC Down Syndrome Foundation. LuMind IDSC is committed to accelerating research to increase the availability of therapeutic, diagnostic, and medical care options for people with Down syndrome and they empower families through education, connections, and support.
Down Syndrome and Alzheimer’s Disease
A person with Down syndrome, a person like John, has a 95 percent chance of developing Alzheimer’s disease by age 65. Most people with Down syndrome will begin showing signs of the disease as early as their 40’s. In fact, Alzheimer's disease is the leading cause of death of people with Down syndrome.
The Washington Post reported: “Of the 210,000 people with Down syndrome, about a third have Alzheimer’s, or are at high risk because of their age, with the average age of diagnosis about 54. The illness worsens relatively quickly, with individuals dying within four years.”
Take a moment to consider those numbers. I am John’s father, and our family has already seen what Alzheimer’s can do to another family member, how devastating it is to the person and for the family. It can be overwhelming to sit here and think that John has within him this awful disease waiting to wreck him from the inside out. When we talk about Alzheimer’s disease, it is deeply personal. John and others with Down syndrome are not statistics, they are our sons and daughters, brothers and sisters, friends, relatives, and co-workers.
We and John cannot sit idly by. We have to take action to change the path that leads to Alzheimer’s.
Participating in the Medical Research Study
John enjoys his visits to Mass General for this research study. The doctors and staff are kind and supportive and assist in making all the arrangements so the visit goes smoothly. For those needing it, they can provide financial assistance to cover travel costs.
The visit consists of several interviews and a basic physical exam. During the physical exam, a doctor took John’s blood pressure, checked his heart rate and breathing, examined his eyes and ears. A technician measured John's height and weight.
A separate researcher interviewed John and his parents about John's daily activities. They wanted a sense of his sleeping patterns and physical routines. They also ask questions about his medical history and any experiences with illness or disease in the past year.
The visit ended with a lab technician drawing a sample of John’s blood.
Medical Research Studies Matter
Medical research studies matter because they provide the data that scientists need to identify the causes of Alzheimer’s and ways to prevent the disease. And as drugs designed to prevent Alzheimer’s move into clinical trial stages, researchers will need test panels to study the efficacy of the drugs.
If you know John, you know that he derives happiness from doing for others. John wanted to join this study because he knows other people are dependent on this medical research. And it was easy.
“It was easy,” said John. “I am so glad I joined this study.” He is so proud of himself for helping researchers who are helping people with Down syndrome.
You Can Make a Difference
If you are a person with Down syndrome or have a family member with Down syndrome, please consider joining the LIFE-DSR study. The study is currently taking place at 14 sites in 10 states and welcomes participants from all across the country. If you need help with travel, they can help you.
You can also support the work of LuMind IDSC by making a contribution that will support this vital research. Your donation will enable more people with Down syndrome to enroll in studies and receive treatment. You will change the world for John and thousands like him as well as their families.
About John’s Crazy Socks
John’s Crazy Socks was inspired by John Lee Cronin, a young man with Down syndrome, and his love of colorful and fun socks—what he calls his “crazy socks.” He and his father, Mark X. Cronin, started the company as a social enterprise with a mission of Spreading Happiness™. With more than 4,000 socks, John’s Crazy Socks is now the world’s largest sock store. More than half their employees have a differing ability, and their Giving Back program has raised over $650,000 for charity partners like the Special Olympics, the National Down Syndrome Society, and the Autism Society of America. Most of all, they are Spreading Happiness™.
For more information about John’s Crazy Socks, visit our webpage, Facebook page, Instagram account, TikTok or YouTube channel. You can also contact us at 631-760-5625 or via email at email@example.com.