About Us

The LAL-D aware organization (Support Organization for LAL Deficiency – Advocacy, Care and Expertise) was created to bring LAL Deficiency patients and families together to share experiences, knowledge and compassion. SOLACE stands for Support Organization for LAL Deficiency – Advocacy, Care & Expertise. The SOLACE organization was created by parents whose children were diagnosed with Wolman Disease who realized there was a need for a caring support community.

Our mission is to provide support for patients and families who have been affected by LAL Deficiency, a rare and devastating disease, and to educate and raise awareness to the medical community.

We are open for suggestions for anything you would like to see on the site. We love new and creative ideas, please don’t be afraid to speak up…this site is for all of us! Also, let me know if YOU would be interested to be on the board!

LAL Solace is recognized by the IRS as a 501(c)(3) not-for-profit organization.

Our Moderator & Medical Advisor

Our Moderator

Brett Billmeyer

I have been diagnosed with LAL Deficiency in 2009. I have been participating in the Sebelipase Alfa clinical trial since 2011. I am always willing to share my experience with LAL Deficiency and the clinical trial. Do not hesitate to contact me with questions.

Never Give Up!

Our Medical Advisor 

Dr Porto

Dr. Anthony Porto is a pediatric gastro-enterologist and hepatologist at Yale University. Feel free to ask him questions regarding LAL Deficiency: Email Dr Porto