My Nonprofit Reviews
Beth F.
Review for Loeys-Dietz Syndrome Foundation, Baltimore, MD, USA
I started the Loeys-Dietz Syndrome Foundation with genetic counselor at Johns Hopkins, Gretchen Oswald. As a parent with a child having a new diagnosis of Loeys-Dietz, it was encouraging to find that there were other parents out there dealing with the same issues and sharing similar stories that we experienced. We are growing strong, and our continued support allows us to provide the resource infrastructure so many families would have been lost without. We have been able to create educational factsheets about this rare genetic disorder, develop a website with a forum where LDS community members and friends may ask questions and reach out for strength and support. We have had a small gathering and brought in professionals in various areas dealing with LDS, and provided research opportunities. We acknlowledge the support of our community and thank them for helping us help others!
More Feedback
I've personally experienced the results of this organization in...
so many ways, both personally and professionally speaking. Personally, because my 10 year old son was diagnosed in 2005, and professionally, as starting this organizatino has allowed me to grow tremendously as I continue to learn more about the disorder, the doctors treating, and the researchers excited and studying for treatments options.
If I had to make changes to this organization, I would...
listen to the LDS community for ideas/concerns to better enhance what we offer. We are growing, and we are learning! We are not afraid to say that we may not know it all, but what we do know is that we will continue to do what is in the best interest of ou rfamilies and friends with LDS.
Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
How did you learn about this organization?
I helped create this non-profit organization.
What is this organization's top short-term priority?
Continuing to raise awareness through our 3-prong mission; education, research, and support.
What is its top priority in the long run?
Encouraging education, fostering research, and providing support for our families.
When was your last experience with this nonprofit?
2011
