I'm here today to share an idea. This idea is that you need to do something. It seems like we got this. Like the people already working on the foundation, my wife and I and Amber and Becky, we're all set. All the pieces are there. And really, we're gonna get some kinda cure or treatment, a pill or something you can run down to Walgreens or CVS or Rite Aid or Walmart or Kroger or Good Neighbor and pick up and give to the person who has Hao-Fountain syndrome and all will be well. It seems like that, right?
Welp, that's just not the case. Sure, we have created teams and issued grants and contacted scientists and launched initiatives and found patients. And yes, we've made some progress here. But all the pieces aren't there. There's a big one that's missing. And that's funding.
We need money. We need you. Yes, YOU. We need you to raise some money. Because this won't happen without you. This won't just happen. Unless you do something.
Maybe you feel like you're too busy. Which I totally, totally get. Raising someone who has Hao-Fountain syndrome fills your calendar with medical appointments and IEP meetings and other things that pretty much move all other stuff off your plate. It becomes a dizzying array of nonstop errands and such. I know this. I am doing it. Same as you. We have help with Tess for at most 4 or occasionally 8 hours out of the standard week. If this is you, and you're like me, you can send a text. Just one text—that’s it. Pick the person in your life that is the closest to you. The one who's there for you through thick and even thicker. Whoever you call when things go sideways. Could be your parent, your sibling, or the person who helps you take care of your kid who has Hao-Fountain. Whoever that person is, text them. This is all you gotta say, and I'm gonna use Tess's name, but you should insert your kid's name. Say: "Can you please donate so we can get to a cure for Tess? Any amount helps." And then send them this link: usp7.org/donate. If everyone in our patient group did that, and the person they texted went to our site and donated. And let's say they all gave five bucks. That would be $1135. Over 1100 bucks. Just from a text. You are busy. And I get that. But you can send one text. And if you think you can send five texts, to five people who care about your family, then knock yourself out. Just give em that link at the end: usp7.org/donate.
Maybe you feel like: well, this is a thing that other people do. I don't need to do it. Someone else will. I'm here to tell ya—it isn't happening. If you've been even considering jumping in. Or if it's occurred to you that you might be able to help. We desperately need you. Right now, many people are only thinking about it. Not enough are actually doing it.
Maybe you feel like we already have enough funding. We don't. We have raised a lot of money since we started this thing in 2017. But we've issued grants. We started a biobank and that costs money. We hired Amber as our executive director. Which isn't free. If this were the Super Bowl, I'd be telling you we have enough for the pre-game show. The part where the announcers talk about the key matchups and show the QB warming up and the receiver catching and they go to commercial like ninety times. We do not have the funding for what comes next.
Now, lots of you already do this. Lots of you already donate. Lots of you are extremely generous and consistent and awesome in the way that you donate. I am not talking to you. To you, I say thank you. I say, we will put this money from you to very very good use. And if you want to keep donating, I encourage you to do that. And if you have the bandwidth to not only donate but raise money for us. That would be amazing. It's as simple as asking your friends. Sending some texts. Mentioning it next time you have coffee with them.
Asking for money isn't easy. It feels weird. It doesn't come naturally. I know. It took me a while to get comfortable with it. One of my best friends here in Maine, a guy called Greg Adey, helped me to realize what this is all about. Many years ago, he was talking to my wife and me about it. And his attitude was: we are your friends. We care about Tess. We want to help. Why wouldn't we want that? So let us help. In other words, people around you are looking for ways that they can help you. And one thing you could do? Throw me right under the bus. I'm happy to be the bad guy. Tell your friends: the dude who runs the Hao-Fountain foundation? He said this week they need more money. He says they can't do the stuff to get to a cure unless I start raising money. Can you donate?
Also, one final note on this. This fundraising thing can actually all be really fun. If you let it. You could design an event. Throw a party. Throw a superbowl party. Tell your guests it's a fundraiser. When you email them the invitation, include a picture of your kid who has Hao-Fountain syndrome. When your guests arrive, tell them about the work we're doing. Serve beverages if you want. Hold a raffle. Make people buy squares in that weird superbowl betting thing that I never ever win. Put out a fishbowl and let people write us checks. They can make out checks to:
Foundation for USP7 Related Diseases
11 Innkeepers Ln
Falmouth, ME 04105
We can do this, Tess Army. And when I say we, I'm including you. Thanks in advance.