Today, I want to tell you about my friend, Jessica. I know her from our years in Oakland, and I was originally introduced to her by my sister, Jordan. Jessica is amazing. When we were moving to from France to California, she stocked up our kitchen with American foods we’d been homesick for (Creamsicles! Rootbeer!), so they would be waiting for us when we arrived.

These days Jessica is the mother of three gorgeous kids. Last year she learned that her son George, has a super rare degenerative condition called Aspartylglucosaminuria (AGU). It is a genetic problem where a certain gene is missing (the AGA gene). This gene's job is to produce an enzyme that breaks down sugars in the body. If it is not working, these sugars build up and cause damage that will get worse and worse as George gets older. It is a VERY rare disorder. Rare as in there are only a couple of hundred people who have this diagnosis in the whole world.

AGU is degenerative and will eventually take George’s life. Patients with AGU have significant developmental delays throughout their youth — in 7-year-old George’s case, he can’t read, write, or ride a bike. The delays culminate in regression, followed by death in early adulthood.

That is obviously a horribly discouraging prognosis, but George’s story is potentially very hopeful. Parents who have children with this disease have been working for years with doctors and geneticists to find a cure, and they already held pre-clinical trials for gene therapy. Result? The trials were successful in mice. Not only did it stop the disease from progressing, but it actually REVERSED the damage that had already been done! So now, AGU families are working to start clinical trials in human patients. George could be more or less cured and live a normal life if this can work.

The trick of course, is money. George, and other kids who are experiencing AGU, could be cured. And the only thing that’s preventing it is lack of money. The organizations that typically fund this type of research aren’t interested, because the disease is too rare. So the families of the affected kids are left to do the fundraising on their own.

Fundraising for AGU has basically become Jessica’s full-time job. And if you needed to save your child’s life, fund-raising would no doubt become your full-time job too. Jessica hosts local fundraisers, makes videos, and gets the word out about AGU in every way she can. She promotes the gofundme that AGU families set up to raise money to finish research for a cure. (The gofundme page is great, because it explains the next 3 specific steps that need to happen to get to clinical trials.)

Jessica isn’t someone with a big following on social media. The network of people around her is very much like a typical mom in your neighborhood. When she’s fundraising, her outreach extends to her friends, her neighbors, her children’s school, and her church community. Jessica’s people love her, and they love her family, and they love George. And she’s been able to fundraise a significant amount of money — over $200,000. But that’s not nearly enough to fully fund the research.

If you are able to help fund this research — research that will save not just George, but all the other children, now and in the future, who are suffering from this disease — that would be wonderful. Here’s the link to the gofundme.

And now I’m going to get angry for a bit. Like me, Jessica is LDS (Mormon), and her congregation has been very supportive of the fundraising she has done. As they should. It’s no surprise to me because I’ve seen Mormon congregations rally around people in need many, many times. But what’s making me angry, is that the LDS church organization (not the local congregations, but the main church organization based in Salt Lake City, Utah) is hoarding $100 billion dollars.

I know hoarding is a strong word, but I don’t know what else to call it when you’re sitting on a massive amount of money, with no plan to use it, while human suffering surrounds you.

The public knows about this stash of money because a whistleblower leaked documents in 2019. And actually, the dollar amount is probably a much higher number at this point, because ultra wealthy people and organizations have seen huge financial gains during the pandemic.

Something you might not know is that as members of the church, we did not know about the billions of dollars until the whistleblower. And justifiably, many of us are very pissed off about it. Why? Because one of the four missions of the LDS church is: serve the poor and needy. And every one of those hoarded dollars could (and should!) be going directly to serving the poor and needy, to relieving human suffering.

The church can and should fund any remaining expenses for George’s AGU research. They should do it because George is part of the Mormon flock and if the church can help, they have a responsibility to help. But of course, the funding Jessica needs is an insignificant drop in the bucket of money the church is hoarding.

Our church is holding onto so much money they could solve massive problems, big and small. Not just for church members, but for the world. They could tackle world hunger in a systematic way. They could buy the patent for insulin and provide it free for all who need it. They could buy Fox News, and other pro-authoritarian media outlets, and replace the broadcasts with neutral BBC-style reports. They could provide monthly payments to poverty stricken communities around the world so people have a chance to improve their situations.

You might be thinking: But if the church funds the AGU research, then they’ll have to fund all sorts of other requests from church members! And yes. Exactly. The church should do that. The church should actively give away the money it’s hoarding to those in need — church members and non-church members alike. If they are like Mackenzie Bezos, they won’t be able to do it fast enough — she started with $36 billion, has given away $12 billion, and is now worth $55 billion.

Faisal Hannan @FaisalHannan1

To give you a sense for how rich billionaires are: When MacKenzie Scott divorced Bezos 3 years ago, she was worth $36 billion. Then she became America's biggest philanthropist and gave away $12 billion. She's now worth $55 billion. Literally can't give money away fast enough.

And the thing is, if the church isn’t urgent about it, that money could disappear without ever having helped anyone. As I’ve written about before, in our financial system, money is basically pretend. If there’s a major economic downturn or collapse, that $100 billion could essentially evaporate.

I don’t know what needs to happen to get the LDS church to spend it’s money, but while we’re figuring that out, let’s go get George the cure the needs.

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That’s all for now. Feel free to comment on anything I mentioned above, or whatever’s on your mind. I hope the new season (hello Spring!) is adding some sunshine to your life.

kisses,
Gabrielle

Hi, I’m Gabrielle Blair and this is my newsletter. It’s completely free to access and read, but if you feel so moved to support my work, please consider a paid newsletter subscription: just $5/month or save money with the $50/annual sub. You can also go way above and beyond by becoming a Founding Member at $75. Thank you! Seriously, thank you. Support from readers keeps this newsletter ad and sponsor-free.

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I Wish My Church Would Stop Hoarding Money