News & Updates

Stickler Involved People Newsletter December 2004

By December 10, 2004 No Comments

Coordinator Comment

Each quarter, when it is time to add my comment, an inspiration has come to me. This time, I have given special thought and I am going to be selfish. I hope to inspire, but in a different way than normal. This, as you know by now, is the 10 year of Stickler Involved People (SIP). I have been overwhelmed by thinking of how many persons we have been in contact with in this 10 years. Not all have not been pleasant, but all have added to my life with Stickler syndrome.

I also want to take an unselfish moment and ask you to take the time to figure out a gift for you and your family. Our conference, in Disney World, will be the opportunity of a lifetime, both financially and emotionally. The only way I have the energy to plan the next conference is from the high of the last conference. Please join us and see for yourself.

Conference 2005

We will have our 9th Annual American Stickler syndrome conference in Disney World. We plan to have a one day conference and a LOT of fellowship in the parks. Our rooms will all be in the same section of the hotel, with free transportation to all parks, for a rate of only $95 a night, along with lower park admission. Each family will call a special number and plan their special time. We will stay at Coronado Springs, July 7-11, with the meeting on Saturday. Disney will provide a detailed brochure, which will be mailed to you in March. NOW is the time to talk to family and friends. They also can have the lower rates!

Christmas specials are available though the Igive website. Try it and add $5 to SIP. If you don’t tell your friends about this easy and free way to help, who will? Each new shopper means an extra $5 donation for Stickler Involved People. That’s on top of money raised by ongoing purchases at These funds are used for aide to persons who could not otherwise attend our conferences. There is no added fee for the purchaser. Just use this link, ?causeid=168

An unsolicited testimonial

“I got Yona’s book last Friday–a week ago today–and stayed up until 1 a.m. that night with it! I skimmed through first, skipping the introduction and looking at every picture and then began to read every page and use the glossary. The introduction by Malka Adler is one of the best parts. I reluctantly reached the last page last night.

I wanted to wait until I had finished it before sending comments to the list about this wonderful book, “The Miracle Next Door.” Well, it is one of the most moving, inspirational, captivating books I have ever read. The way Yona handled every life-threatening crisis with Yissy should be an inspiration to all of you out there who are struggling with the same issues with your
little ones. This book reinforced my feeling that God does handpick the parents
when he has a little one with problems to find a place for.

And the CD. Yona plays the piano, keyboard, and her percussion and
drums are absolutely fantastic. I have never heard flute and harp and guitar combined so well. And all of the girls in her band have beautiful voices–there are solos and choir. I had to go out and buy a CD player with earphones to listen–How could I justify going out to the car and listening with gas the price it is???
Yona’s ballads, especially the last work, a lullabye is absolutely beautiful. And you hear Yissy’s contribution, very clear! You have the feeling that it is truly a miracle that this young man is alive and able to be heard!
Mazel Tov to you, Yona–Chaim and the boys. Thank you for this absolutely
wonderful gift at Christmas and Hanukah! And please share the praise with Malka Adler, your neighbor and co-author–her sensitivity and insight and just plain admiration for you are on every page. And to Mindy and the other girls, your friends and for the feeling that through this book, they are now also OUR friends! Thank you, Yona and hugs–also a season of love, light and
chocolate! Mimi Barden “

Yona has been featured twice in our feature ”Meet a SIP”. You can read about her new book and order it from

Stickler-TheElusive Syndrome

This book, written by Wendy Hughes, explains, in layman terms, the condition, possible medical problems, and how it can affect individuals. The approach is positive and leaves the reader with hope and skills to manage Stickler syndrome.

Wendy’s book is available for

$28.50 payable to Stickler Involved People. The cost includes exchange to British pounds, shipping and handling. Send requests to: Stickler Involved People, 15 Angelina, Augusta, KS 67010