Tickets on sale and donations open for Fragile Wings Fierce Hearts: A Night for EB

Well, it's an evening of raising hope and awareness for a skin disorder so rare, most people have never heard of it. We have Mary and Jamie here to speak with us on how you can help find a cure for EB. Good morning, ladies. How are you? Good morning. Good morning. Well, thank you for being here and thank you for sharing your story. If you don't mind, just share a little bit about what EB is. And I understand that your daughter kind of inspired you to get involved. Yeah. EB or epidermolysis bullosa is actually a group of rare connective tissue disorders. but it primarily affects the world's largest organ, which is the skin. So her skin is as fragile, I usually say, like a wet paper towel. It breaks and shears as easily as that. My daughter Mackenzie, she turns two tomorrow, and she was born with this incredibly rare disease, and I just wanted to fight for her. I wanted to fight to get her a future and more treatments and hopefully a cure one day. So that kind of is the inspiration behind it. There is no cure for EB right now. It's incredibly rare, but we are making great strides with increasing awareness. And I'm just doing everything I can to help with that. Yeah. And as I was kind of scrolling through your website, learning about your daughter, learning about the gala and just all that you guys are doing to help. There is no cure, but in addition to the progress, there are gels. There are different things that EB research is helping right now and manage this because I've got to imagine it's painful. Yes, it's excruciating. Yeah. And there's all different types of EB too. And it impacts people in different ways. And I think so both myself and my two daughters also have a different form of EB. And it's been interesting to see how such a small community can be impacted. There's also another family on the board that is also impacted by EB. And so for all of us within kind of a mile radius to come together as a community to help raise money for research for those types of treatments, I think has been has been really great and ultimately a cure, hopefully. Yeah. Yeah. And the fact that it is so rare to be able to have that community support is meaningful here. Yes. So you also have a gala and this is coming up soon. And I really encourage people to take part. And if you can't even come donate, share a little bit more about what's happening. You'll have auctions, all sorts of things, and it's coming up in a couple of months. Yeah, so our gala, it's our second annual Fragile Wings, Fierce Hearts, A Night for EB Gala. It is on February 6th this next year. We did it last year. We raised over $155,000 in our inaugural gala for EB Research. All of the proceeds go to the EB Research Partnership, and they are the ones who are really skyrocketing all of this funding for and research for a cure and for more treatments and all of that. And it is a phenomenally fun night for such a terrible disorder. We really are, our whole community is behind us and wanting to create hope with us. And so we have really meaningful speakers. And then we want to celebrate the progress that we have made. And how has that been for you, seeing the progress that your children have made? And also, even as parents, having that support system, it means a lot. It does mean a lot. And I think for me personally, it's been great to see my kids become such advocates. And it's teaching them such an incredible lesson to fight for things that, you know, kind of the underdog, right? And be able to use your voice for change, I think, has been a really great example. As Mary's a great role model for that as well. So it's been great. And I think, really, the community really can help us in a number of ways. I would say no donation is too small, no silent auction item is too small, and that we really can band together and make a difference. And where should folks go to be able to donate, to support? Is there a website? Yeah, so our website is our name, FragileWingsFierceHearts.com, and on there you can find everything you'll need. You can buy tickets. Tickets went on sale this week. but also we have all of our information about sponsorships and our silent auction donations and other financial donations that you can make and truly nothing is too small over the summer we actually had a campaign of you know six dollars give six dollars today and skip your cup of coffee every single cent that we raise goes straight to that EB Research Partnership but the night of the gala we have a phenomenal silent auction and we do tend to group things together if they are smaller so that it makes a bigger impact overall. So truly, we'll take anything. Anything you want to donate, we can take. And it's amazing. And thank you even for your children for being advocates because even the name Fragile Wings, Fierce Hearts, they can still fly but just need that support behind them. So thank you so much. All right, we'll put those details on our website as well. Thank you, ladies. Thank you. All right, guys, coming up, one Brewer's fan is taking his love for the crew to the streets. Stephanie Quirk got an up-close look at his customized ride, and we were talking with her next.