25 for Madison’s 25th (also, hi!)
Wow. After years of having this idea in our minds and hearts, we can officially say…welcome to our foundation’s website! With this launch, we hope to create a space to raise awareness for HBSL, find a cure, and support other families living within the rare disease community.
Before we go any further, an introduction seems necessary. My name is Madison McLaughlin. Hi! I’m proudly a board member of the MacPac Foundation, and the oldest sister to three incredible young women. Two of my sisters — Marissa and Mahrynn — are diagnosed with the ultra rare disease HBSL, while our other sister — Mallory — is a carrier of the same disease. How rare is it, you ask? Currently, there are less than 25 people worldwide diagnosed with HBSL. My sisters are two of them. We built this foundation to provide financial support to families like ours and to fund research for a cure.
I must confess, the timing of our website reveal is no accident. This week I’m turning twenty five (and I have a brand new grey hair to prove it). It was important to me that our website launch in sync with my birthday this year. Like most people, given our current quarantine, I’m not exactly partying it up with my friends or sharing cake with everyone I love in person this year. So I came up with the next best thing: turning my 25th into the ultimate fundraiser to find a cure for HBSL. We’ve worked tirelessly to get the site up in time for our #25forMadisons25th challenge. In lieu of a party this year, please join us in celebrating my 25th trip around the sun by donating $25 to find a cure for HBSL.
MacPac Foundation is a 501(c)(3) organization, and as such, your donation is tax deductible and will go straight to fund research and support families affected by HBSL.
As we move into 2021 and our website and foundation grow, we’ll strive to create a space of community and support for the families, doctors, scientists, and researchers in the HBSL and rare disease community. Please find us on Instagram and Facebook and join us in the fight to find a cure for HBSL!
