LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
Two weeks ago, Stephanie Dykes, Dakota's mom and our Board's secretary, and I travelled to San Diego for the WORLD Symposium. This was a conference dedicated to Lysosomal Diseases, such as Wolman's Disease and CESD. It was a gathering of medical professionals, scientists and patient advocacy organizations, such as LAL Solace. Stephanie and I were able to meet so many wonderful people who are working to raise awareness and treat these diseases. We listened to speakers discussing the LAL Deficiency clinical trials. We were able to have one-on-one meetings with people who are going to be able to help us make lalsolace.org a much more educational and supportive place. We will soon be joining the National Organization of Rare Diseases and other organizations dedicated to rare diseases. We are going to be exploring the possibility of having our site translated into other languages so that this can be the global organization we need it to be. We will be working with scientists and doctors to be able to provide YOU important information about the disease, testing, clinical trails and lot of other issues. We spoke with doctors from around the world about the stories you, our members, have shared on the site about the frustrations of getting the correct diagnosis. They are listening. We are working very hard for you. Now that we have become an official non-profit organization, we will be able to outreach to more groups, join professional organizations and meet the awesome people like those at the WORLD Symposium so that we can be heard! I thought I would include a picture of our trip.