The moving story of Carol Jennings, APP and Alzheimer's
In all my years as a brain researcher, I didn't think to sit down and learn the stories of individuals afflicted with brain dysfunction until I sat down to write a book. Learning their stories has been one of the most impactful parts of this experience.
Among them: Carol Jennings. In an era in which the causes of Alzheimer's were not thought to be genetic, Carol's father and four of his siblings were all diagnosed with the disease at the ages 54-58. She started writing letters to Alzheimer's researchers wondering if her family could contribute to some type of study. One of those letters was written to John Hardy and it set off a chain of events that changed the course of Alzheimer's research for the next 30 years.
"Dear Sir, I was very interested to read of your research in the Alzheimer’s Disease Society News and think my family could be of use ... please contact me at the above address if you think we could be of help." April, 1986.
That letter led to the discovery of a single point mutation in the gene APP that leads to the protein beta-amyloid. It was a key step toward Hardy and others launching the amyloid cascade hypothesis, which in turn led to the new Alzheimer's drugs. (While their effectiveness thus far is questionable, they are a necessary step).
Carol spent the next 30 years as a patient advocate. She refused to be tested for the gene herself absent a cure. Tragically, she was diagnosed with the disease in 2012.
Here's more about Carol and her devoted husband and caregiver, Stewart.
https://www.alzheimers.org.uk/blog/honouring-couple-dementia-their-contributions-research
(Watch the movie. Have tissues ready).
Nicole Rust /
npub1cu…0zuw2
2023-08-19 09:10:05
Author Public Key
npub1cud99prgj4etl597aaxthxenrcjmfxl92dgj8snf9a9p8ctupfyq80zuw2Published at
2023-08-19 09:10:05Event JSON
{
"id": "0ae56071e81f96312af7d97fe156d156eed182b4e37fde230224df8e4f42064d",
"pubkey": "c71a5284689572bfd0beef4cbb9b331e25b49be5535123c2692f4a13e17c0a48",
"created_at": 1692436205,
"kind": 1,
"tags": [
[
"proxy",
"https://neuromatch.social/users/NicoleCRust/statuses/110915499181254129",
"activitypub"
]
],
"content": "The moving story of Carol Jennings, APP and Alzheimer's\n\nIn all my years as a brain researcher, I didn't think to sit down and learn the stories of individuals afflicted with brain dysfunction until I sat down to write a book. Learning their stories has been one of the most impactful parts of this experience.\n\nAmong them: Carol Jennings. In an era in which the causes of Alzheimer's were not thought to be genetic, Carol's father and four of his siblings were all diagnosed with the disease at the ages 54-58. She started writing letters to Alzheimer's researchers wondering if her family could contribute to some type of study. One of those letters was written to John Hardy and it set off a chain of events that changed the course of Alzheimer's research for the next 30 years.\n\n\"Dear Sir, I was very interested to read of your research in the Alzheimer’s Disease Society News and think my family could be of use ... please contact me at the above address if you think we could be of help.\" April, 1986.\n\nThat letter led to the discovery of a single point mutation in the gene APP that leads to the protein beta-amyloid. It was a key step toward Hardy and others launching the amyloid cascade hypothesis, which in turn led to the new Alzheimer's drugs. (While their effectiveness thus far is questionable, they are a necessary step).\n\nCarol spent the next 30 years as a patient advocate. She refused to be tested for the gene herself absent a cure. Tragically, she was diagnosed with the disease in 2012.\n\nHere's more about Carol and her devoted husband and caregiver, Stewart.\nhttps://www.alzheimers.org.uk/blog/honouring-couple-dementia-their-contributions-research\n(Watch the movie. Have tissues ready).",
"sig": "b526c9d38bd656c8bfdc2f9a2466c5ec6cd97b20a7ba1c6fb675d881cff7f26057566d9d32f3dd3c52870625aca8f14b1cdca8cfe7eb245bd18a0bc5e2e64c93"
}