News & Updates

Stickler Involved People Newsletter December 2005

By December 10, 2005 No Comments

December 2005

Coordinator Comment

There is a new commercial that says something like “WHAT IF does not mean a thing unless it becomes WHY ME“. My boss suggested that every person in the world should have that statement visible daily. WHAT IF my child is not perfect or WHAT IF I have too many health problems were not parts of what I worried about, until it became WHY ME. Accepting the loss of a “Healthy” image has been a long time experience and I know that I am not 100% there yet. May this holiday season be such a great one, for you, that WHY ME is not even a part of it. Count your blessings and pass a blessing on to another. Happy Holidays!


SIP wonders if there is any reader who has now read all 40 issues of the newsletter, in addition to the editor. If so, please contact SIP.. In the mean time, the following correction is a first for the SIP Newsletter. Our eyes and the eyes of the proofreader failed, not once but twice. Corrections to the last edition are as follows:

Tom Lacey made a donation in the memory of his son.

New Video donations:  Chester Smethurst

Breaking news!!

Weekly, SIP gets inquiries as to how to know if a person has Stickler syndrome. Now, the National Institutes of Health has gotten its diagnostic criteria published. The article is posted on our web site or is printed in American Journal of Medical Genetics, 138A:199-207 (2005) A search on Dr Pete Rose and Diagnostic Criteria will also find the article. As you know, there is no thing that will rule out a Stickler diagnosis, but this has criteria has been 98% accurate compared to those with a genetic diagnosis. The article is sent here as an attachment. If you cannot open it, the article is posted to our web site

The Miracle Next Door

Anyone who has ever been on our list server will remember Yona, our chocolate LOVING philosopher. She has been featured twice in our newsletter feature ”Meet a SIP”. She is now the author of a book chronicling the struggles with her son and Stickler syndrome. You can read about her new book and order it from