March 2005
Coordinator Comment
Winter, spring, summer and autumn. The seasons change, the clothing changes, the symptoms change, the world changes, but we seem to be evolving. Most of us cope with a lot and have found ways to help others. May your life be blessed by changes.
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. We will stay at Coronado Springs, July 8-10, with the meeting on Saturday. Each family will call a special number and plan their special time. Disney has set up special websites for both hotel and park admission tickets. NOW is the time to talk to family and friends. They also can have the lower rates!
STICKLER Syndrome WORLD WIDE
AUSTRALIA:
We are a small group with few inquiries. Newsletters are produced 1-2 years, depending on demand. Contact can be by either internet, phone or writing, though internet is preferred. Stickler Syndrome Australia Support Service (SSASS) 7 Noojee Court, Kallangur. … Qld 4503. AUSTRALIA PH: (07) 3886 0665 E-mail: ssass@hotkey.net.au No web page as yet.
CANADA: www.barbspage.com/stickler.html, email: lockey-shea@canada.com
NETHERLANDS: http://www.bosk.nl/templates/mercury.asp?page_id=5634, or just surf to www.bosk.nl and click the Stickler’s button. There is only the Dutch language support.
Central e-mail address is BvanBeek@bosk.nl
THE UK: We are in the processes of re-vamping our website, so do have a look at it. www.stickler.org.uk My email for Stickler is info@stickler.org.uk
RELATED HELP:
Marshall Syndrome: There is the address for the site : http://health.groups.yahoo.com/group/MarshallSyndrome/
Here is the address for the Site that is new: http://www.marshallsyndrome.dns2go.com/
Pierre Robin Syndrome: Pierre Robin Network was formed to network families and individuals with PRS and provide information to anyone who has an interest, www.pierrerobin.org info@pierrerobin.org
How to book Disney reservations: The special room and admission rates are good for 3 days before and three days after the conference dates. If you need more days, let me know. Some years, people have booked elsewhere, thinking they got a better rate. This year, you would cheat yourself out of 1/2 price rooms, being located in our special block of rooms (close to the bus and meeting space), and special discounts on park admissions, as well as cheating SIP out of our necessary room count. There is a special phone number for Stickler Involved People to make your room reservation: 1-407-939-1020
The weblink for room reservations : dmeetings/global/reservations/reservation?resort=CoronadoSprings&office=Cr
Your credit card will be charged for the first night’s room, at a rate of $95 plus tax.
The tickets weblink will give you the opportunity to mail, phone or fax in your customized ticket order directly to Disney.http://www.wdwinv.com/tickets/75/Stickler.pdf is for tickets. As a reminder, these are special Meeting/ Convention Disney Park Hopper tickets that are unavailable for purchase at the front gates of the Theme Parks. Unlike other Disney packages, you will book your own airfare.
OTHER ESSENTIAL INFO
The SIP brochure is enclosed. This year, registration fees will be $40 a person. For this, you will receive Saturday breakfast, and a catered lunch. The first 75 registrants will receive Saturday dinner at the German buffet restaurant in EPCOT and dessert and fireworks on the island in the middle of the EPCOT lake! There will be special plans for those who want to fellowship together in the Parks on Sunday.
Pat normally takes vacation later, but this year “I’m Going to Disney.” So, there will be no one available for late registrants. The only GUARANTEE of conference materials will be by the registration deadline of May 18. No new plans for childcare will be available after that date.
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
New Film on Stickler Syndrome – What is the film about?
For the first time, an educational film is being created for people living with and affected by Stickler Syndrome (SS) and for health care professionals. This 30 minute film aims to increase awareness of diagnosis, care and treatment of SS and the impact this disease has on individuals and families.
Who is producing the film?
Tina Hahn is an award winning producer at Symmetree Media in Toronto, Canada. She has successfully produced a number of documentaries on other health conditions such as Tourette’s syndrome. For more information please go to www.symmetreemedia.com
How much will the film cost?
The total cost of the production is ~$80,000.00 Canadian ($64,000.00 US). Copies of the film will be reproduced on DVD/video and distributed and sold at a nominal cost.
To date, I have raised $30,000.00 Canadian. I have achieved this through golf tournaments and events such as spa days and special dinners. These events did not cost me much except time. I now need your help! I will not be able to raise the remaining funds on my own. What ever you can donate would be helpful!
When will it be ready?
Hopefully by spring 2006. (Some filming will be done at the 2005 conference.)
What you can do to support this film? Donate to SIP with the request that the funds go towards the production of the Stickler Syndrome film. A tax receipt can be provided for donations $50.00 or more.
I look forward to hearing from you along with any comments you may have. Thank you for your support.
Kim Barwise, k.barwise@rogers.com
Executive Producer and Mother of 7 year old with Stickler Syndrome
Igive.com
As you remember, we belong to Igive.com. They have offered the $5 again for first time members who place an order within 45 days. These funds are used to help persons attend our conferences. The weblink is http://www.iGive.com/html/refer.cfm ?causeid=168
Contributions Recognized
SIP received contributions from the following since the last newsletter:
- John Dietel
- Jose Hernandez
- Mamie Malo
- Susan Philibert
- Two contributions facilitated by
- Tim and Jan Helfer
SIP SCHOLARSHIP
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.
Scholarship applications for graduating high school seniors are on our website. Deadline is June 15.
Cartridges for Kids
Cartridges for Kids is a national recycling program that has been helping groups earn funds in a unique manner for seven years. They work with over 10,000 groups nationwide to recycle: used cell phones, used laptops and PDA’s, and used printer cartridges. They do pay on over 1,000 items of value. They also provide pre-paid shipping labels to have items sent to their warehouses. Laptops are worth up to $200, cell phones up to $45, and cartridges up to $12 (even inkjets are worth a $1 on average!). This appears to be another way you can help SIP and not cost you anything. Their web site is www.cartridgesforkids.com if you would like to look at price lists or find out more information about the group.
Connective Tissue Study Purpose: 1)investigate arthritis and musculoskeletal issues in Stickler syndrome, and closely related disorders. 2) Discover gene locations not yet known.
The newly set protocol has slots for large family groups (about 10 persons) willing to give blood and a medical history, (by phone).
If your family is interested in participating in the study or would like more information, please contact: Nazli McDonnell MD, PhD at: McDonnellNa@grc.nia.nih.gov or Delva Houston at 410-558-8494. Please when you call or email, provide an address, phone number and cell phone number so they can send information about the study and/or call about scheduling.
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 www.targum.com