Volume 3, Number 3 – September 1998
Coordinator Comment
Every autumn, I am envious of all the beautiful mums that are everywhere, except my yard. So, today, I planted mums for the future. I also did some thing very fun. I played in the water. Now, someone more conservative would say that it was necessary to get the ground wet and keep it damp. I know that I played, because I came in muddy from toes to knees and elbows to fingers. Next year, I will laugh at my mess, and again enjoy mums. Do something good for you today and then do something good for another.
Happy Autumn!
Stickler – The Elusive 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.
It 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
NIH STUDY Status
The National Institutes of Health (NIH) is working on getting all who volunteered into the system. Some will only send data. Others will go to NIH for exams. They now have 100 Stickler involved families and can use more. If you want to volunteer for the NIH study, contact Pat. Joie sent us a very special way to help. If ANY of your family has joint surgery, the NIH needs to be contacted in advance.
A SPECIAL THANKS
As a group leader, I want to thank each speaker at the 1998 conference. Each of you need to know that there is no way we could have gotten better speakers. Dr Nina Ahmad put this slate together and even found funding for a speakers’ luncheon. She is invaluable to us! Also, we were again honored by Dr Stickler attending. Thanks to all who made this such a memorable event…..including our special childcare people and the great families who attended this conference.
A New Project!!
Nancy writes “I am making up a booklet on helpful hints for living with Stickler Syndrome. I need lots of input from my sticky friends. I will categorize the information so it can be a quick reference book. Please send hints to me via private mail or e-mail. I have started the booklet and needs lots of hints. I am looking for daily living hints, like all the ones I have been told about helping my son get along better at school. My main focus will be on simple ideas to help people adjust. You know, everyday practical ways to live with Stickler syndrome. Start those ideas coming!”
Please, please, send them!
Nancy Barry
20 Sunset Ct
Fowler, IL 62338
Email to: nbarry@adams.net
Nancy’s employer has even volunteered to underwrite the expense for this project. So, let’s let them know how responsive we are and how much we appreciate the support !!!! Send Nancy ALL the ideas you use every day and want to pass on.
A CONTEST
The contest for the newsletter only got 5 votes. Therefore, we do not feel that this is an issue with our membership. The “winner” was an “in house” suggestion, so no prize will be awarded. Thanks to those who voted..
STICKLER LIVING BOOK
We are working on a project to help our budget. It is a booklet written by members of SIP. It will be a living document, in that it will grow as members send in their story and it is a document on living with Stickler syndrome. This will be a fund raising project for SIP.
Melissa Ratchford is editor and has worked VERY hard on this project…. MANY hours and we owe her many thanks. The booklets are now available by mailing $6.50 to SIP, 15 Angelina, Augusta ,Ks 67010
NEXT STICKLER LIVING BOOK
Sharing feelings and concerns is very healthy and helpful also. So, please write down your story, even if you choose to not send it to Stickler Living Book. You may submit your story to be printed anonymous, but our editor will need to have your name. Do it NOW, to get into the next edition of our ongoing booklet.
LIST SERVER
Those of you blessed with a computer need to try out our NEW list server at no cost or obligation. The directions to subscribe are on the website: www.sticklers.org
What we have done
We had a very successful conference with 27 families in attendance and representatives from the NIH joined us. SIP will be represented at the Alliance of Genetic Support Groups Annual Meeting. We are nearly to the 300 mark in mailing names on our database. We are making great plans for Denver 1999. We have been added to 4 more publications listings of support groups. We are working on permission to reprint several items for the newsletter and website.
DO YOU WANT US?
There are mailing lists that we all could name that just keep sending us things that just get thrown away. If this newsletter is one of those for you, or if you want to be taken off the SIP contact list, write to the News- letter address: 15 Angelina; Augusta, Ks 67010.
A Member’s Request
SIP received a request for “news” about successes (or lack of) with surgery to correct speech. Here is one response we got: “My son was born with a cleft palate which was surgically corrected when he was 11 months old. He still didn’t say a word until he was 3 years old and even though he was going to speech therapy he wasn’t making much progress. He knew what the wanted to say but he physically could not make the sounds. On the recommendation of his teachers and therapists I took him back to the cranial facial surgeon who repaired his original cleft. after some extensive test they found his palate to be short and immobile.
At the age of 4 he had pharyngeal flap surgery, where a shelf was made from the back of his throat and connected to his palate so he would be able to close off his nasal passages to make certain sounds. Yes it was major surgery, but the difference it has made is unbelievable. He’s now 7 and while he still needs extensive speech therapy to unlearn some bad habits that he acquired before the surgery he can communicate with everyone. Before I was the only one who understood him. Now he can talk to anyone.” A BIG THANKS to Lori for answering this request!!!
RESOURCES
Glenda Brunings, who is working hard to get the Australian group (see other article) going has a new e-mail address as of June 1, brunings@hotkey.net.au Their website is http://dove.mtx.net.au/~mrossnay/stickler.html
Barbara Lockey is also working on the Canadian website at http://home.ican.net/~17976
England based Stickler Syndrome Support Group, website is http://www.netcomuk.co.uk/~gfmsssg
Another Email address we want you to be aware of is http://www.eyegive.com
This is a website of advertising that pays Not-for- profit organizations for your sign-ons. SIP is listed, and you have to register us for us to get paid. So far, we have earned $1.65 from having enrolled with them.
Try it and see if we can add funds to SIP. There is a place on that website to buy books and toys, and 5% will be donated to SIP. Think about Christmas coming and look at this website. THANKS!!
NEW IDEA!!
SIP is always looking for moneymaking ideas and now has a volunteer for a new project. Pat Gourley will compile a Stickler Involved People Recipe Book. “How about a cookbook done up from all our nightly/holiday creations? We have such a large group from all parts of the world that it would be great if every one could contribute 4/5 recipes. Any one who would like to draw pictures to introduce each category would be great or sayings/witticisms from your area that might pertain to the recipe that you send in. Actually any suggestions would be most welcome.”
Pat Gourley’s e-mail address is rtchford@glinx.com Street address is 14 Wade Street, Kentville, NS Canada B4N 1B6…. NOW is the time for you to get out your favorite recipes and send them to Pat. WHAT A GREAT IDEA!!!!! Deadline Oct 15. We hope to have this ready for Christmas.
OTHER TALENTS
In Philly, we had the privilege of sharing the special talents of two of our own. Jim Holsomback shared several of his sculptures with us. We also had the privilege of hearing Yoni Yacobovitz’s latest tape, For All Time.
NEW TOPIC
We have not ventured into the topic of “qualifying for SSI disability”, due to lack of personal knowledge. But, several persons have asked about it in the past. Recently, we got three e-mails about successes. In fact, all three took SIP pamphlets to their hearings. One man writes:
‘the newsletter help me in court for SSI, it was the first time Social Security has ever used any thing like it in court.’ If you need more information, contact SIP, at the letterhead address.
SPECIAL INTRODUCTION
As you have read, we have a new website and a new location for our list server. Michael Cermak is the moderator of this site: www.sticklers.org , the webmaster of the family site www.cermaktech.com , a webmaster of the Waynesboro Area School District Home Page www.cermaktech.com/wasd and is The Tech Support Guy: www.cermaktech.com/techguy . He has been featured in many national and
international publications including April 1998 Money Magazine. His brother, Glenn, is the webmaster of www.estefan.net and a friend of Gloria Estefan. Gloria and Glenn where on the Rosie Show Friday April 24, 1998. He is a straight “A” student.
Appreciated Letters
I keep the post office busy sending all these articles and newsletters to my daughter. You really do make such a difference in all our lives. My daughter came to visit last month and had to go to the doctor as soon as she hit town. She handed him your pamphlet “What Doctor’s Need to Know” and he spent 30 minutes studying it before seeing her. Again, he had never heard of it. We make lots of copies and give them out to doctors that we know. Your work has enabled us to cope. (Mom) & (daughter)
I just can’t explain what it has done for my very being, my soul. Meeting Dr. Stickler was something I can’t even find a word to describe. Meeting Joie and Dr. Ahmed and just feeling their caring, I am overwhelmed.
I also could see that it helped my teenage son. All of these years of my telling him that he can’t do karate or basketball or whatever and dealing with his anger and taking him to all the doctors’ appointments and telling him that he had Stickler’s Syndrome.
Being at the conference helped him really to understand what that means. He is at an age when he is defining who he is and this is part of him. I know that he now understands that part. He really enjoyed helping out with the kids, I could tell by his stories about what they did together.
Claudia
Hello, from Australia
I am writing to let you know that a Support Service is now operating in Australia. At present there are about 20 families that are known to us.
Recently the Genetics Resource Book, produced by the NSW Genetics Program, was released with our details in it, so we are hopeful that this will produce some interest.
Some of our families are already experiencing friendship through this common interest. I am very grateful for the services of one family who have kindly offered to maintain a Web page for Stickler’s here in Australia. This is already producing some interest.
Please look us up on:
http://dove.mtx.net.au/~mrossnay/stickler.html
We would be pleased to have you sign our Guestbook as a record of your visit. In time we are hoping to add more links and personal stories.
As our numbers grow and the communication links get easier, I am hopeful that the friendship that is shared between the countries will help the awareness of the Stickler Syndrome condition spread throughout the world.
Glenda Brunings, Queensland, Australia.
FOR PARENTS
These suggestions, along with many other can be found in the book, Perspectives on Disability, by Mark Nagler.
- Remember that children learn illness attitudes and behaviors from their parents. If you act negatively or project fear, your child may do the same.
- Try to view your child’s disability as a challenge, and an opportunity for growth and development. If possible, avoid viewing your child’s disability as a “weakness” or “a punishment.”
- Keep a sense of membership in the family for your child with a disability. Reassign roles and jobs. Do not exclude your child from chores because of his disability. Explore ways for him or her to participate in planning outings and vacations. Do not automatically veto a suggestion because you think he or she cannot handle physically the activity.
- Join support groups. Network with other families who have children with disabilities. By sharing “war stories” you will not feel isolated or alone. Remember, there are many parents who face the challenge of being a parent to a child with a disability. There are hundreds of helpful organizations out there. Seek them out.
Copyright 1997; Health ResponseAbility Systems, Inc., Collective Work & Database iVillage Better Health http://www.betterhealth.com/AOL keywork: better health
NEW Study Information
At the Stickler syndrome conference in Philadelphia, Dr Stickler pointed out the success of a study done in Israel. We pulled the abstract from Healthgate. It is a 1996 article with Leiba H; Oliver M; and Pollack A as authors. They studied 42 person with Stickler syndrome and did the procedure on 10 eyes. One person dropped from the study, but the other nine retinas remained attached in a follow-up from 1-15 years. Check this out for future reference.
CONFERENCE NOTES
We are waiting on permission to print video copies of 1998 conference. For now, paper
COPIES of conference notes taken by four different people are available. Contact Karen Olehy, 202 Circuit Court, East Peoria, IL 61611 The cost will be $7 and checks are made to SIP. Send payment to Karen.
Annual Meeting
Ballots were passed out to any persons who had not voted in our annual election. The votes were compiled with those mailed to SIP. Fill-in ballots elected Pat Houchin: Coordinator, Karen Olehy: Secretary and Registrar, Marge Owens: Newsletter Editor, Lori Vickery: States Contact. The position of Treasurer is still vacant. If you are willing to help. contact SIP today.!!!!
REMEMBER
DENVER COLORADO is the place to be for the 1999 Stickler Conference. Rick, Randy and Sheri Bishop will be hosting us. June 11-13, 1999, at the Marriott TechCenter. Rooms were just finished redecorating and will be $65 a night, conference rate. There are both indoor and outdoor pools, a sauna, Jacuzzi, and exercise room. This is an exceptional value for Stickler Involved People and for each of you who are able to attend the conference next year.
Please set this time aside to join us. We have carefully considered all the evaluation forms and incorporated ideas that will work for next year. Also, we will be doing more panels with doctors and , therefore, more small group discussion time. We also are working on a “select one of the following” format, for special interest situations. At the suggestion of Dr Stickler, we are setting up a doctor’s panel, where lay people can ONLY sit in and listen. Again, The dates are June 11-13, 1999 at the Denver Marriott-Tech Center. PLAN NOW to join us then.
SSSG CONFERENCE
In the mail, today, we received an announcement about an upcoming Stickler Syndrome Support Group workshop. It will be Saturday, November 21st, 10am to 4:30pm at the Charles Hasting Post Graduate Center, Worchester, England. The topic is “Joint Involvement Within Stickler Syndrome”. Dr A Rai will speak, with a question and answer session. After lunch, a physical therapist and occupational therapist will offer help with joint pain, general exercises and “aids available to make life a little easier”. No nursery will be available.
If you are able to be there, contact Mr Conrad Hughes, 27 Braycourt Ave, Walton on Thames, Surrey, KT 12 2AZ BY SEPTEMBER 18. Email is available. If you send a request to SIP, at houch@southwind.net we can give that e-mail address to you.
TOLL FREE NUMBERS
We found a list of numbers that you might need for further assistance. They are as follows:
Hearing Aid Helpline: 1-800-521-5247
Lucent Technologies Special Needs Department: 1-800-233-1222
Eye Care Council: 1-800-960-EYES
Audio-Reader: 1-800-772-8898
REMINDERS
With such a busy newsletter, here are points to remember. Check off your interests:
- Visit the NEW SIP website
- Send Pat Gourley 4-5 recipes
- Send for Wendy’s book, $28.50
- Visit the new list server
- Write a check for Stickler Living Book, $6.50
- Turn in vacation time for June 11-13, 1999
- Write down Stickler syndrome experience
- Send helpful hints to Nancy
- Mail $10 to support SIP efforts
- Tell a doctor about Stickler syndrome or mail them a brochure.
- Send $7.00 for 1998 conference notes.
- Contact Pat for NIH study.
- Let SIP know if not interested in mailings
- Decide to submit to Stickler Living Book
- “With chronic pain comes chronic grief — the loss of your image of a perfect child, loss of mobility, sight, or hearing; But we don’t have to dwell on it, just be aware that it is there”.