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
All my life I've hated piano lessons. 45 minutes of being told how to move my fingers in ways that I just couldn't do, and dealing with the embarrassment when I couldn't play the music in front of me because I hadn't practiced over the week. But when I was with Uncle Jonny, I remember not only taking pride in my piano lessons but desperately wanting him to teach me more. I remember being in constant awe of his raw natural talent, and just wanting to learn from this musical genius. Even though I continued to hate the actual lessons because of Uncle Jonny I sat at the piano and played everything I could because it made me happy. Uncle Jonny made me enjoy playing the piano, even if I had to sit through the lessons. It has come to a point now where I've been given the option to continue my piano lessons or not, and I've chosen to continue. Not only because I know Uncle Jonny would want me to keep learning, but also because nothing makes me feel closer to him than sitting down at the piano and learning how to play another Beatles song. I sit down at that piano and think of him talking to me and teaching me not how to play but how to love the music. He taught me the love for playing piano, and that's the greatest lesson I could've asked for.
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I just came back from visiting Uncle Jonny. It was a good day for him.
He was making eye-contact, stringing words together, sometimes he
would even respond to people when they spoke to him. And when Sean
played the piano, sometimes if we were really lucky, for a second he
would start to sing too. It was these moments during the weekend that
were the most exciting and the most saddening. One time, when I was
feeding him dinner he said, "Sammi?" My heart started beating so fast
and I said "Yes Uncle Jonny?" He simply said, "how you doing best
buddy?" And then the moment ended, but it was this moment that made me
so happy yet so sad. He remembered me. No matter where he is mentally
right now, somehow even for just a moment, I was with him. As
wonderful as this made me feel, it's these brief moments of Uncle
Jonny shining through his sickness that are so hard. It's when you
realize that he's still there. He's still the most amazing person that
we all know and love, just wrapped in a layer of Alzheimer's. No
matter how much he starts or continues to slip away, somehow he'll
always be with us and we'll always be with him, and this is the
happiest and saddest truth of my uncle.
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