My Nonprofit Reviews
lpapsun
Review for Loeys-Dietz Syndrome Foundation, Baltimore, MD, USA
My husband and son were diagnosed with LDS a few years ago. When we heard the positive diagnosis, we thought we had received a death sentence and were all alone. However, the LDSF has given us more support than we could have imagined. By connecting with others through the foundation's website and social networking, we know we are not alone. Our struggles are the same as so many in the world of Loeys-Dietz. Additionally, the information we have gained from this network, the website, and the educational factsheets have made us feel empowered rather than doomed. I cannot thank the foundation enough for its work to better the lives of families like mine. I look forward to attending the next convention with my family.
More Feedback
I've personally experienced the results of this organization in...
the pamphlets for teachers/schools about LDS, networking, information
If I had to make changes to this organization, I would...
more guidance on how to assist the organization, pins or awareness bands for LDS, update website more frequently, utilize social networking more
