Charitable Gift Giving

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Rett Syndrome Necklace that helps Retts Research

June 17th, 2021 · No Comments · Uncategorized

There are lots of places you can find gifts that promote awareness for common diseases and ailments like cancer and heart disease. In fact, for some cases fundraising through gift giving has become an industry in itself.

I’ve spent a lot of time over the years highlighting those kinds of products, and of course I’ll continue to. But I also love to bring attention to causes that no one knows about. Here is one of them.

Rett Syndrome is a very rare neurological disorder that results in severe muscle movement. It happens to girls primarily, and can be extremely debilitating. It’s perhaps hardest on the parents. For the first 6 to 18 months of a child’s life, they may see their baby developing naturally, and then Rett syndrome can hit between 12 and 18 months over a short period of time, where their child suddenly can lose the ability to move their hands, walk, or communicate.

Often, there’s a feeling of helplessness and even guilt among the parents, even though there’s nothing they could do to prevent it. It’s a genetic disorder that affects the MECP2 gene, which is found on the X chromosome.

There’s no cure for Rett syndrome, maybe in part because it’s such a rare disease (under 20,000 cases a year) that most funding and efforts go towards other diseases. But of course for the families that experience Rett’s, it’s life-altering, as the child will need constant care for the rest of her life. And yet with a loving home, a young girl with Retts can live a full life.

I chose this gift to highlight because it was designed by a jewelry maker on Etsy with an amazing story. She’s a scientist, researcher, and art instructor who, as she puts it on her Etsy profile has an unlikely Super Power–autism. She and her husband (also on the spectrum) have designed incredible jewelry, including jewelry based on the amazing patterns that happen in nature’s molecules. Check out her designs for the molecule for catnip (perfect for cat lovers), and the molecule for caffeine (for coffee lovers), and dozens more.

This particular pattern hits especially close to home. It’s a rendition of the IGF-1 molecule of the brain. People with Rett Syndrome have a decreased level of IGF-1. There’s promising research around therapeutics involving this molecule that gives hope to girls and their families suffering from Retts, including one of the artist’s own daughters.

It’s a beautiful piece on its own, but so much more meaningful when you know the story behind it. And when people ask you about it, you can help bring attention this ailment that needs a lot more attention and funding.

Portion of proceeds goes to Girl Power 2 Cure, a charity dedicated to finding a cure. Visit here to make a direct donation yourself. You can also learn more about Rett Syndrome here and here.


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