Support

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 (age three at the time) 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 
(phone) 202-487-4235 
info@curelbsl.org 
3520 South Wakefield Street, Arlington, VA 22206, USA 

Connect with the LBSL Community

Join the LBSL Family Facebook Community (For Patients and Caregivers Only) ​

We invite patients and amily members to this private Facebook community. ​Click button below:

Join the RareConnect LBSL Community (Available in 13 Languages)  ​

We invite patients, families, clinicians, and researchers from all over the globe to join our RareConnect community.  

Need Help Coping

Need Help Coping with an LBSL Diagnosis? ​

We are here for you. Sometimes it’s just nice to talk to someone who has been down the same road.  Email Beth at bmcginn@curelbsl.org. ​

Need more support?

Our partners offer many other forms of support, including webinars, virtual support groups, meetups, and more.   ​