Volume 3, Number 1 – March 1998
Coordinator’s Comment
I have a double excitement! First, we have done a lot of work to get this conference off the ground. But, a lot more work was done by our host, Dr Nina Ahmad. We each need to extend our appreciation to her. Enclosed is the registration form. Plan NOW to join us.
Second, you will soon be able to make Stickler syndrome history. Dr Stickler created a questionnaire about Stickler syndrome and its effects on you. SSSG and Sip are honing the process. You will soon receive one copy, under separate mail. PLEASE, PLEASE take the time to fill out a copy of this survey for each affected person in your home. This kind of study has NEVER been done before and will take 10-15 minutes of your time, but may change your life!
Weekly, I get questions about “chance of” or “how possible is” and I have to say “No one knows.” Now, you have a chance to contribute to the answers. I really cannot over emphasize the importance of this questionnaire. The opportunity each of us now has is so overwhelming that I get goose bumps. It is SO exciting to have Dr Stickler working on Stickler syndrome again!
What we have done
This quarter, we got our first “company matched” donation and that is very exciting. We watch for more. Our list server participation has doubled. Several more doctors and medical students have been educated by our web sites. The Canadian and Australian web sites are up and working. Our member- ship is close to 250 families. Plans are going well for the 1999 conference. One of us, in Europe, volunteered to mail out the newsletters there and save us overseas postage. We have hopes of having the first edition of the Stickler Living Book available at the conference. We are still giving of and sharing with each other.
Write Now
Remember, if you do not have computer access, and want to make contact, write Jean Van Sciver 17 Read Avenue, Bloomington, DE 19804 302-999-7761. If you call, let it ring or leave a message…
Stickler – The Elusive Syndrome
This book, written by Wendy Hughes, explains, in layman terms, the con-di-tion, possible medical prob-lems, 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 Peo-ple, 15 Angelina, Augusta, KS 67010
NIH STUDY Status
The National Institutes of Health (NIH) is working on getting all of us (who volunteered for their study) into the system. Joie has help now and is contacting each of us on the level that she needs. People are beginning the interview level. If you have concerns, or 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.
STICKLER LIVING BOOK
We are working on a project to help our budget. It will be a booklet written by you. It will be a living document, in that it will grow as members send in their story and a document on living with Stickler syndrome. We have several stories now. Melissa Ratchford is editor and can use some art and poetry, also. This will be a fund raising project for SIP.
We need your story. If you are wor-ried, it can be edited and send back for your approval. Shar-ing feelings and concerns is very healthy and helpful also. So, please write it down, 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 first edition of our ongoing booklet. We are setting a deadline of May 31, for our first edition.
LIST SERVER
Those of you blessed with a computer need to try out the list server at no cost or obligation. Just send an e-mail to stickler-syndrome-request@corp.nsc.com with the single command subscribe in the body of the e-mail message. TRY US.
REMEMBER
July 10-12, in Philadelphia, is the place to be for the next Stickler Conference. In connection with that Annual Meeting, we will be electing new officers for this group. Ballots will be mailed, in the next newsletter, if we get a slate of officers to present. If you are willing or even able to serve in one of the capacities as follows, PLEASE submit your name to be on the ballot. We need a Newsletter Editor, a States Contact, a Conference Planner, a Secretary, a Treasurer, AND a Coordinator. PLEASE specify which job you are willing to take on. Give us a brief detail of your talents and experience!
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.
Conference News
Last spring, SIP received an advertising Email for a book that sounded interesting to us. We sent for the book and it was one of those “too good to put down”. It is called Special Children, Challenged Parents (The struggles and rewards of raising a child with a disability) by Robert A. Naseef. This book was written with a caring and humorous presentation by a parent of an autistic child. Bob will be speaking at our July conference.
We are also honored to have Dr Doug Wilkin and Dr William Tasman speak at this conference. Dr Wilkin will be coming from the NIH to give us an update on the progress of the connective tissue disorder study. Dr Tasman heads the ophthalmology department at Wills Eye Hospital and NEVER speaks on Saturdays, but will give of his time for us.
Another BIG THANKS to Dr Stickler for being with us again….
FREE HEARING for Children
This is a repeat of information from our first newsletter, but is still very important. We found a phone number for the Miracle-Ear Children’s Foundation. They provide moldings, aids and repairs to children 16 and under, who meet eligibility requirements. So, if you need this service, give them a call at 1-800-234-5422 to find out what their criteria is.
A CONTEST
IN the beginning….. We tried to get a name for this newsletter. But, for what ever reasons, we only got one suggestion. NOW, we want you to use your creative processes, and so we will have a PRIZE for the best suggestion. Let this be a topic at the dinner table and send your suggestions to SIP, 15 Angelina, Augusta, Ks 67010.
A Member’s Request
When one of our members sent their $10, they made a request. They want to hear about successes (or lack of) with surgery to correct speech. So, LET’S HEAR FROM YOU.
CHDCT
Stickler syndrome is recognized as a heritable disorder of connective Tissues and Stickler Involved People is a member of the Coalition For Heritable Disorders of Connective Tissues (CHDCT). We were asked to make a statement as to the importance of research into genetic issues. A Senate subcommittee, considering additional financing to the National Institutes Of Health, heard examples of “what it means to me” that some of you have written to SIP. Our paragraphs were presented to the subcommittee by the CHCDT. So, you did some good that we just wanted you to know about.
CHCDT includes other support groups associated with Chon- drodyspasia, Ectodermal Dysplasias, Ehlers-Danlos syndrome (which is included as part of the NIH connective tissue research), Epidermolysis Bullosa, Marfan syndrome, Osterogenesis Imperfecta, and Pseudoxanthoma Elasticum. You can reach CHCDT at 383 Main Street, Port Washington NY 11050 or call 516-883-8712. They have information on each of these disorders, if you know of someone who needs information.
Reader response
SIP loves to hear from readers of the newsletter. Lori responded to the brochure of Helpful Hints and added her own shortcuts, as follows: She writes phone numbers, in big marker, on the last page and back of her phone book. She uses a calendar with large squares and always puts the phone number with any appointment, on the calendar. At work, she color codes files, so that she does not have to read to look for them. She uses wheelchairs that stores provide, to save her energy.
Claudia sent a great flyer titled “Being Partners with Your Child’s Service Providers”. Some of the ideas are: “trust your instinct about your child. If you don’t understand, say so. Repeat what you hear, in your own words. Get and keep copies of all your child’s medical records, including x-rays.” Copies are available.
RESOURCES
The November issue of Alliance Alert, the newsletter from the Alliance of Genetic Support Groups (1 – 800 – 336 – GENE), contained several resources for specific needs. We are passing some along. Home Healthcare Catalog from Mail Order Medical Supply, 1- 800 – 232- 7443. Changed by a child: Companion Noted for Parents of a Child with a Disability, by Barbara McGill (Doubleday; HC, Sept 11, 1997) is a collection of inspirational readings offering emotional and spiritual respite for parents of children with disabilities, $19.95. Call the American Foundation For the Blind (1-800-232-3044) for a free guide to toys for children who are blind or visually impaired, or for a list of videos about multiple disabilities. They also have a list of Foundations that provide rehabilitation counseling for persons who are blind or visually impaired. Mapping Fate: A memoir of Family, Risk and Genetic Research, by Alice Wexler (University of California Press, Berkeley, 1996) is “essential reading for anyone with questions about genetic disease and genetic testing.”
An Appreciated Letter
Those of you who write are greatly appreciated. This is what SIP had meant to one of you: “I have changed as a person because of my involvement with you and everyone on the list server. It sounds funny from a 42 year old to hear such a thing. But, there something so empowering about finally knowing about my body (and my son’s) and why or what is happening to it. Even more than that, is what happened to me form listening to so many others talked about their experiences. …… Learning to give to people whom you’ve never seen, but know so intimately is another lesson…. Somewhere in all of this is self esteem and confidence and learning to give without thought of oneself. It is amazing how I can love so many people that I have never met face to face. What is incredible is that I know even though we are so different, we are so strongly connected and related. We belong to one another.” Could not have said it better.
New Friends! Old Friends!
We received a flyer from Children’s Hopes and Dreams, 280 Route 46, Dover NJ 07801. They match pen-pals for children. Their number is 973-361-7366. We have NOT tried them out, but it appears a good program and is free.
We also want you to be aware of a GREAT program by MUMS. They are a parent-to- parent organization and will do “parent matching”, covering 2300 disorders. You can contact them at 150 Custer Court, Green Bay, WI 54301-1243. 920-336-5333 Email: mums@netnet.net
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 not seen anything adverse from having enrolled with them. Try it and see if we can add funds to SIP. THANKS!!