Good News: The FDA and Medicare/Medicaid Approve the Alzheimer’s Treatment Drug Leqembi

Did you know that a person with Down syndrome, a person like John Cronin, founder of John’s Crazy Socks, has a 95 percent chance of developing Alzheimer’s disease? 

We have just had a win in addressing Alzheimer’s among people with Down syndrome. The FDA has given full approval for the use a new drug, Leqembi, for the treatment of early Alzheimer’s disease. And the Centers for Medicare and Medicaid Services (CMS) has announced they will provide reimbursement for the drug. 

Picutre of a bocx and bottle with Leqembi

Why is this a victory? Because they originally intended to exclude people with Down syndrome. Led by the LuMind IDSC Foundation and with the support of advocacy organizations like the National Down Syndrome Society (NDSS) and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), CMS changed its policy making this drug available to the vast number of people with Down syndrome who can benefit from this treatment. 

Much work needs to be done. Advocacy works. Speaking up makes a difference. 

Nearly Every Adult with Down Syndrome will Develop 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 and the majority in their 50’s. In fact, Alzheimer's disease is the leading cause of death of people with Down syndrome. 

By comparison, the general population has a 12 percent chance of developing Alzheimer's disease. 

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 devasting 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. 

Supporting Advocacy Work 

At John’s Crazy Socks, we support the work of advocacy partners like the National Down Syndrome Society and the LuMind IDSC Foundation

Our “Forget Me Not”: Alzheimer’s Awareness Socks honor and celebrate those suffering from Alzheimer’s disease as well as the loved ones who care for them. The socks raise money for research into Alzheimer’s. These beautiful socks feature a purple ribbon and the phrase “Forget Me Not.” John’s Crazy Socks donates 10 percent from every pair sold to the LuMind IDSC Foundation

John Cronin designed and created the world’s first Down Syndrome Awareness Socks in 2017.  Since that time, John has designed many new Down syndrome-themed socks and products, including throw blankets so that John’s Crazy Socks now has a full line of Down Syndrome Awareness products. John’s favorite socks are the Down Syndrome Super Hero Socks. Come holiday time, John’s Crazy Socks creates a holiday Down Syndrome Super Box that has products made by companies led by or employing people with Down syndrome. 

We donate money from the sale of those socks and products to the National Down Syndrome Society. 

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 $625,000 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 service@johnscrazysocks.com.

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