News & Updates

Stickler Involved People Newsletter December 2003

By December 10, 2003 No Comments

December 2003

Coordinator Comment

I spent a bit of time in “memory Lane” this week. I went to our Stickler website and read the old newsletters again. It was like looking back at each year’s family Christmas pictures. Some smiles, some rough times, and lots of love come through each memory. It is clear, to me, that things evolve, as well as bodies and that minds mature. Take a moment (or longer) to appreciate the evolution of your situation. Give yourself a hug and a time to relax and enjoy the holidays. Time is the best gift and we must remember to share it with ourselves, also. Happy holidays to you and yours.


This newsletter’s editor is in need of input from you. We would still like to get a different name for the newsletter and need your suggestions. If you would like to submit a suggestion for an article, send it. If you want to submit your story for “Introducing a SIP”, send it (preferred by email). If you have questions about Stickler syndrome, we will try to get an answer. We need feedback to improve this newsletter!

Contributions Recognized

For our first several years, we listed names of persons who contributed financially to Stickler Involved People. Then, for several years, we did not. A decision has been made to start listing contributors again. Since the September newsletter, SIP has not received any donations. If there are persons on your Christmas list who need nothing, send a contribution to any charity, in their honor.


Dr and Mrs. Stickler have generously donated the start-up money for a fund to provide high school seniors, who have a diagnosis of Stickler syndrome, with a four year scholarship. A committee has completed the hurtles for the IRS and has the program going. Applications will be available after January 1, 2004. This fund is now available for your tax deductible contributions!! You can make donations in honor of parents, your child, or your spouse.


I have a 7 yr old son, who was born with a
cleft palate. At 3 months old, he was diagnosed with Stickler syndrome. I was
diagnosed with the same, but was only diagnosed because my son was. The
consultants and doctors saw a lot of similarities in us which probably explains why I had a cataract operation 8 yrs ago. I have a slight hearing problem. I don’t know much about Stickler syndrome yet, but would like to know more. My son does see a lot of specialists and consultants but I never seem to get a chance to ask the questions I want. I was relieved to see there was a website for Stickler syndrome. All I knew was that my son got it because I have it. Wendy

Conference 2004

We will have our 8th Annual American Stickler syndrome conference in the Chicago area, JULY 10-12, 2004. We are looking at one hotel designed specifically for the visually impaired. All the details and the registration form will be in the March Newsletter. If you know a great speaker to add to our list, please contact us now. We are especially needing a counselor (or psychologist, or psychiatrist) who can spend some time with the teens at the conference, as well as speak with the conference. This was a special suggestion from the 2003 conference.

More News about 2004 Conference

One of our members, J J Jackson, will be present to autograph his newly published book. JJ has been a friend of Stevie Wonder, for a long time and was asked to write Stevie’s biography. It will be in print in time for next year’s conference and we will have an exciting extra for our conference. JJ shared this information with us, as will as some photos of him with Stevie, at the San Jose conference.


With Christmas upon us, you can give to SIP, without costing you. Sign up through to do your online shopping!

Internet Sites of Interest

This is a Stickler’s Outreach page, in the hopes of connecting with those affected with Stickler on the West Coast, especially in Oregon. The URL is Please keep in mind it is still a work in progress.

Have a wife or husband with an illness and need some support of your own?