the why
Taryn's World...and Welcome to It! originally premiered on the Internet as a feature of Rare Genetic Diseases In Children: An Internet Resource Gateway (RGDC.), sponsored by NYU Medical Center, and was intended as a fun and sometimes educational site for special kids . As such, it was meant to be the juvenile counterpart to its parent and host site, RGDC. It was, and still is, intended to demonstrate that we all have our potential, and we all have a need for fun and a safe haven from the apparent random vagaries of nature. Most of all it was designed in tribute to one very special child, Taryn , of whom her sometimes beleaguered Dad is eternally proud.
the where
In 2001 Taryn's World migrated to its own web domain and became more firmly affiliated with the International Society for Mannosidosis & Related Diseases, an American-based, globally-focused nonprofit organization. Other than this physical relocation of computer files and other non-personal, inanimate electronica, the essence of Taryn's World remains the same. Oh, except that Taryn is now a teenager, in contrast to the age group she belonged when Taryn's World was created; thus, a slight change in tone and sensibility has been added!
the who
Taryn's World is solely the creation and responsibility of her webmister and dad, Paul Murphy. I have been actively involved in the genetics community since Taryn was diagnosed with Alpha Mannosidosis in the fall of 1994. In addition to a standard 32 hour per week day job, I am sometimes frantically trying to keep pace with my activities in the International Society for Mannosidosis & Related Diseases, the Genetic Alliance, the National MPS Society and the National Tay-Sachs & Allied Diseases Association, among others, and trying to adequately maintain RGDC. Not to mention, of course, my 24/7 duties as a bona-fide, certified, card-carrying, care-giving DAD, a job for which I was singularly unqualified when I took it on, but which has changed my life indelibly.
the what
It is important to understand that Taryn's World makes no claims, espouses no beliefs, nor supports any corporations or commercial organizations. We strongly urge parents and adults to monitor every teen, adolescent and child while on online. Always consult one's own physician or trusted advisor in matters pertaining to the physical and mental well-being of your children. Above all, listen to and love your child; each one is a very precious commodity and deserves nothing less than the best we can give.
the how
We welcome your comments, questions, feedback, pointers and involvement in championing special kids everywhere. We are especially interested in building Taryn's Club Med as an alternative web ring, of sorts, for other websites for special kids. Drop us|me a line and I|we will be happy to correspond. We also encourage letters to Taryn, though I cannot with good conscience confirm that she will respond. She is a teen after all! We will make every effort to ensure that one of us does, however! Each and every visitor to Taryn's World is important and the reason for which we persevere!
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