From Our Founders
Dear Friend,
Although the diagnosis you received is not one you ever wanted, please know you are not alone. We are a community of families and individuals who stand ready to support you during this difficult time. A happy, healthy and meaningful life with LBSL is possible and hope for a cure grows closer each day.
We launched this foundation in 2013, shortly after our oldest daughter Ellie (then age 3) was diagnosed with LBSL. What began as an effort to help one little girl has grown into an international campaign that unites families, doctors, and researchers around the world. Our diverse patient community represents all ages, ethnicities and manifestations of LBSL, including infantile onset, early-childhood onset, late-childhood onset and adult onset.
Our mission is to provide support, awareness and drive research into a cure for LBSL. We do this through online forums, patient conferences, fundraisers, online resources, and one-on-one support. We believe empowered patients make healthier patients and that together we are stronger.
We look forward to connecting with you and helping you along this journey.
Sincerely,
Beth and Mike McGinn
Founders of Cure LBSL
info@curelbsl.org
3520 South Wakefield Street, Arlington, VA 22206, USA
Connect with the LBSL Community
Join the LBSL Family Facebook Community (Patients and Caregivers Only)
Patients and family members are welcome to join this private Facebook community.
Give Us a Shout
Whether you’re a newly diagnosed family or you’ve been walking this journey for awhile, Cure LBSL is here for you. Sometimes it’s just nice to talk to someone who has been down the same road. Email our executive director Morgan Voigt — she’s an LBSL mom, too!