My Uncle Jonny and me

My Uncle Jonny and me
My name is Sammi and I’m 12 years old. Four years ago at the age of 54 my Uncle Jonny was diagnosed with early-onset Alzheimer’s. It has come to a point now where he can barely speak and doesn’t even recognize me, let alone have any memories of our time together.

For my Bat-Mitzvah I'm trying to gain awareness for Alzheimer’s and get 1,800 people to think about my Uncle Jonny because he can’t think for himself. I call it Save the Memory. It’s too late to save my Uncle Jonny’s memory, but by donating to Alzheimer’s research with hope we can save the memory of others.

To help save the memory please donate to Hebrew University's Alzheimer's research

To help save the memory please donate to Hebrew University's Alzheimer's research
Please click the above logo to make a donation. In the Honoree Information section type Sammi’s Bat-Mitzvah in the first name box. This will ensure that your donation will go towards Alzheimer’s research. For the Honoree email please type sammiobatmitzvah@gmail.com. Thank you for your generosity.

For Canadian Donations

For Canadian Donations
Please click the above logo to make a donation in Canadian funds. Click Fund and in the box to the right select the option titled Sammi’s Bat-Mitzvah Alzheimer’s Research Fund. This will ensure that your donation will go towards Alzheimer’s research. Thank you for your generosity.

Hebrew University on the forefront of Alzheimer's Research

Hebrew University on the forefront of Alzheimer's Research
Jerusalem, July 20, 2009 – Research carried out at the Hebrew University of Jerusalem has resulted in a promising approach to help treat Alzheimer’s disease in a significant proportion of the population that suffers from a particularly rapid development of this disease. In the research at the Silberman Institute of Life Sciences of the Hebrew University, scientists solved a mystery as to why people who carried a mutated gene known as BChE-K were prone to more rapid development of Alzheimer’s than those who had a normal version of the gene. This mutation appears in about 20 percent of the American and Israeli populations. Indeed, these carriers tend to develop the disease later than others, but when that happens, it progresses more rapidly and does not respond to medication. Therefore, the bottom line is that carriers of the mutated gene have a greater risk than others for disease progression. The reason for this anomalous situation has been a puzzle for a long time, but the studies by the Hebrew University scientists solved it by finding the explanation for this increased risk, thereby offering as well a possible new therapeutic solution.

Save a memory of someone you love

Save a memory of someone you love
Uncle Jonny showed me what music really could be
I was talking to my parents one night when we were talking about memories. I was saying how remembering events and things I’ve done was different than an actual memory in my opinion. I was saying how I have fragments of memories where I remember myself in that exact place and time. It’s a different feeling; it’s like just for a moment you’re in that place again. I have few of these as most people do, but even fewer with Uncle Jonny where I can actually remember something from my point of view instead of just remembering an event. One of these memories is Uncle Jonny & Aunt Hildy were staying with us for the weekend and after school on my way home I had stepped in dog poop. Uncle Jonny instantly and selflessly had offered to clean my shoes. I distinctly remember running as fast as I could into my parents’ room and seeing Uncle Jonny kneeling over the toilet holding my shoe and a toothpick. I remember laughing so hard and being so happy. This memory is so strong that I can remember Uncle Jonny looking up and smiling and saying something but I can’t remember what he said, and that’s all I remember of the moment. Every moment I have with Uncle Jonny, I’m always laughing or smiling or just so happy no expression can describe it. It takes a great man to make picking poop out of an old sneaker a moment I’ll remember for the rest of my life.
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Out of all the people I've talked to, all the posts I've read, when talking about Uncle Jonny the most common word used is “special.” I guess there’s no other way to some up Jonny in one world other than “special.” He is musically gifted, incredibly smart, he was athletic, hilarious, loving, and all around special. But what made Uncle Jonny different was the way he made people feel. He walked into a room and you felt special. He’d look at you and smile and you felt special. That’s all he had to do. It was like he has this type of happiness that just pores out of him into everyone he sees. Many people have thanked me for creating this blog and creating a place for people to just talk about the amazing times they had with Jonny. But really the person we should be thanking is Uncle Jonny for making these moments happen. We should be thanking him for making everyone one of us feel so special.
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This blog wouldn’t work for everyone. A blog similar to this could be thought of only as a loss. But when I look at this blog, wow. Look how my Uncle Jonny changed the lives of so many people, not only just my family and me. Uncle Jonny was such an incredible man that everyone just smiles when they think of him. He’s inspirational, memorable, kind, incredibly talented, and I’ve never felt luckier to call him my Uncle Jonny. He had this way of just making you feel good. There’s no other way to describe it other than you were always happy when you were with Uncle Jonny no matter what you were doing. I remember when we were walking home from dinner one night in New York. We were walking back to my house when a homeless man came up to us and started singing. He had been looking for money but when he started singing so did Uncle Jonny. His face was startled at first, he had not expected someone to start singing with him, but by the end of the block I've never seen someone’s face more lit up. Uncle Jonny had made this homeless man so happy just singing along with him. Uncle Jonny has the power to make everyone feel good, even a homeless man on 86th street on a cold Saturday night.
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