Sites Offer More Than Just a Celebrity Name

Although medical research certainly isn’t driven by celebrity, it doesn’t look the other way either.

Big names like Elizabeth Taylor and Sharon Stone have helped raise millions of dollars for AIDS organizations, to name just one example. When celebs start their own foundations, the effect can be even more powerful. On top of name recognition and money, they often bring a strong personal commitment, having suffered from the target disease themselves or seen family or friends suffer.

Yet while celebrity foundations are poised to provide real educational resources through their Web sites, which most have established, very few do the job. Elton John’s AIDS foundation is no more than a portal to collect money, for example; the same goes for hockey legend Mario Lemieux’s site to raise money for Hodgkin’s disease research. But several celebrity sites provide more:

* Doug Flutie Jr. Foundation for Autism

www.dougflutiejrfoundation. org

The 1984 Heisman Trophy winner and longtime Buffalo Bills quarterback Doug Flutie established the autism foundation with his wife, Laurie, after their son was diagnosed with the condition at age 3. The strength of Flutie’s site is its information page, which gives brief answers to questions such as: What is autism? What causes it? (No one knows, but the site reassures, stating: “Children with autism are not unruly kids who choose not to behave. Autism is not caused by bad parenting. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.”) The foundation also provides an extensive list of autism sites, including legal resources and book publishers. But for a site committed to helping “less fortunate families who have children with autism,” there is little guidance on what to do, where to go and how to assess a child’s needs.

* Michael J. Fox Foundation for Parkinson’s Research

www.michaeljfox.org

Best known from the TV series “Family Ties” and, later, “Spin City,” actor Michael J. Fox was diagnosed with early-onset Parkinson’s disease in 1991. He went public in 1998, committing himself to raising money for Parkinson’s research. Fox’s site includes two very useful features: a list of more than 30 links, from research sites to a Web page with Parkinson’s humor; and an extensive glossary of terms, which cover the basics (diagnosis) and the not-at-all basics (Lewy bodies, abnormal structures seen in dying cells that indicate the presence of Parkinson’s). The site’s coverage of research and news is sparse; by and large, it covers the projects it funds. But the collection of basic information and links make this a good first stop for those worried about Parkinson’s disease or those newly diagnosed.

* Boomer Esiason Foundation

www.esiason.org

The former quarterback for the Cincinnati Bengals and New York Jets started his foundation after his son, Gunnar, was diagnosed with cystic fibrosis in 1993. And like Fox and Flutie, Esiason posts some general health information on the disease, along with resources--not only Internet links but newsletters, support groups and good books for parents of kids with cystic fibrosis.

But the general information on this site is surprisingly technical. “CFTR protein with the delta F508 mutation is misprocessed and is degraded prematurely before it reaches the cell membrane,” begins one paragraph of on overview article. Many parents of CF kids surely understand all of this; but it’s heavy going for a novice.