"Hey there Brett. Thanks for taking the time to share your story and leave a comment. Since my diagnosis in 2008 I've been trying to gather as much information about CESD as possible. While I've talked to a few of my doctors and read many…"
LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
Welcome to Our Community
LAL SOLACE (Support Organization for Lysosomal Acid Lipase Deficiency - Advocacy, Care and Expertise) was created to bring LAL Deficiency patients and families together to share experiences, knowledge and compassion. We welcome both early onset (Wolman's Disease) and late onset (Cholesteryl Ester Storage Disease) patients and families!
Meet our Moderator
Mary Pruitt
Mary and Charles lost their precious son Gage to Wolman Disease in 2009. Mary founded LAL Solace to use her experience to help other families.
Meet 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: anthony.porto@yale.edu
FAQs
Latest Activity
"Hi Grant. I was diagnosed with LAL Deficiency (CESD) in 2009. I have since met, spoken with, and have been treated by many prominent doctors who study LAL Deficiency. When I was first diagnosed, there was very little…"
Latest News
Gage's article in the Washington Post!
***A NEW CLINICAL TRIAL FOR LATE ONSET LAL DEFICIENCY***
Synageva BioPharma Corp. has begun the ARISE Phase 3 clinical trial for late onset Lysosomal Acid Lipase (LAL) Deficiency/Cholesteryl Ester Storage Disease (CESD).
The ARISE (Acid Lipase Replacement Investigating Safety and Efficacy) clinical trial will evaluate the safety and efficacy of sebelipase alfa (SBC-102). Patients, age 4 and over, diagnosed with LAL Deficiency, may be eligible for enrollment.
Additional information on this trial and a list of participating trial sites may be found at http://www.clinicaltrials.gov/ct2/show/NCT01757184 or by contacting Synageva directly at clinicaltrials@synageva.com.
This is OUR Episode! I was able to go on Lifetime and talk about LAL Deficiency! Take a few minutes to watch!
You NOW can see LALSolace in YOUR language! Check out the bottom of the page for our new translation service!
**New Clinical Trial Info for Wolman's Disease**
Please check out the link above to find out more about the CLINICAL TRIAL for early onset Lysosomal Acid Lipase Deficiency...also known as Wolman's Disease!!!!
*Additional information about clinical trials can be found through the LAL Solace Clinical Trials Resource Center
http://www.centerwatch.com/ctrc/LalSolaceOrg/
New INFO Posted on Getting Tested for LAL Deficiency! Look under the "Clinical Trials" Tab
ATTENTION PERSIAN JEWISH COMMUNITY! If you or someone you know are part of the Persian Jewish Community, we desperately need your help! Please help us by taking part or sharing this survey. It will only take a few minutes and the information gathered is invaluable. Every little bit of information we gather will be used to further advance the research and treatment of Wolman's Disease and Cholesterol Ester Storage Disease. We are counting on you! Please click on this link: Survey Regarding Genetic Issues in Persian Jewish Community
Forum
Treatment
Started by Holly Hume. Last reply by Mary Pruitt Apr 25. 1 Reply 0 Likes
I just have a question. My son who is 6 is going to be starting the treatments soon. We just have to fill out our part of the paper work and also make sure we have all blood work and the other stuff done. So my question is there anyone here that has…Continue
Bracelets and Brochures
Started by Mary Pruitt Nov 11, 2012. 0 Replies 0 Likes
We still have plenty of bracelets to give away. We also have brochures now if anyone is interested in receiving one. You can message me your address and I will be happy to mail it to you. Let's spread awareness for LAL Deficiency! Continue
CESD or not CESD?
Started by Jay Rosenthal. Last reply by Mary Pruitt Nov 11, 2012. 4 Replies 0 Likes
Hi everyone,Since April, I've been poked, prodded and passed from doctor to doctor like a game of hot potato in search of a diagnosis. Now, after being negative for HIV, Herpes, Infectious Diseases, Autoimmune Diseases, Wilson's Disease and being a…Continue
Our First Giveaway!
Started by Mary Pruitt. Last reply by Mary Pruitt Oct 21, 2012. 8 Replies 3 Likes
We have LAL Solace bracelets! I will be happy to mail free bracelets to the 1st 10 people who respond! Just provide your name and address and how you are affected by LAL Deficiency. Continue
