Sandvox Website Profile: “The Desminopathy Reporter”

My website is designed with a GotoLibrary, comprised of genetics & life science resources, peer-reviewed free full-text articles, searchable scientific knowledge bases, and a link list to health organizations relevant to myofibrillar myopathy due to mutations in the genes for desmin and alpha B-crystallin proteins. In addition to my weblog, with updated posts on new research findings, there is a full Desmin Mutation Matrix table, coupled with descriptive Desminopathy Basics 101, and practical information for patients and clinicians about day-to-day living With Desminopathy in the document locker.

The target audience for my website includes patients and their families, caretakers, and doctors who wish to learn more about this rare muscular dystrophy (desminopathy) that affects both heart and skeletal muscle, and for which there is no treatment or cure.

My site is the only known site that collects in one place freely available, expert information about desminopathy--a rare form of muscular dystrophy--as to which research is underfunded and most doctors in clinical practice are ignorant.

I used the design Clean Sheets for my site because it best enabled me to replicate the "look and feel" of scientific journal articles. It also sets off my tagline--"Making sense of missense, nonsense, and other vexsome gene mutations." Although my site is not intended to provide medical or legal advice or medical diagnosis or treatment, its content is all derived from expert scientific bibliographic and image repositories.

I am in the process of building a tag cloud using Diigo to deploy on my site. I am already using a custom Google search engine but a tag cloud--a feature many viewers prefer--will be complementary.