LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
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.
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
Mary Pruitt posted a discussionATTENTION 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
CONGRATULATIONS to our Board Secretary Stephanie Dykes (Dakota's Mom) on graduating from Nursing School!!!
We are now members of NORD! The National Organization of Rare Diseases. They are a great resource! Check out their website: http://www.rarediseases.org/
SURVEY posted under forum section. Please take just a moment to fill this out...we truly need YOUR input to better serve our community!
Started by Mary Pruitt 6 hours ago. 0 Replies 1 Like
If you are a member of the Persian Jewish Community, please please take a moment to fill out this important survey and we would love if you could share it with other members in the community. You can find the link at the top or click on this…Continue
Started by Karen deJong. Last reply by Melissa Aguilar Apr 16. 9 Replies 2 Likes
It is amazing how much difference a little bit of Lysosomal Acid Lipase can make. There is such a huge difference between Wolmans and the later onset CESD. Amy has been on a very low fat diet for a few months now. She is doing much better- her…Continue
Started by Melissa Aguilar. Last reply by Melissa Aguilar Apr 16. 2 Replies 0 Likes
I have been away for a while but am back! I have been sick and we are trying to find out what is wrong. Besides my liver and spleen being enlarged, I now have a small nodule on my thyroid, I have extreme pain on my abdomin (lower quadrant) I have…Continue
Started by Mary Pruitt. Last reply by Melissa Aguilar Apr 16. 3 Replies 1 Like
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
