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News & Updates

Coordinator Comment

My dad used to say “Well, there are some days that a fella just should not get out of bed.” I am sure that I bring some of those to your mind at the moment. My family has had a “rough patch” over the last two months and now hope we are all through it. Those of you who are on the list server already know details and I will not “bring down” the season for the rest of you. Please be assured that our hearts and support are coming back. Have a Merry Christmas, think of ways to help someone else, and make good New Year’s resolutions. See you in July.

 

A NEW PROJECT

“Many of you I have met at SIP conferences.  Also, you may have met my son, Graham (age 14).  Graham has an assignment for his 9th grade honors biology class and has permission from his teacher to do a project related to Stickler syndrome.  We are hoping that the info  he gathers will also prove useful to those with SS.    If you participate in the list serve, you may recall that Graham had to have his ankle growth plates removed this summer.  This surgery was necessary after the doctor made a failed attempt to remove the growth plate screws in his ankles.  Before the growth plates were removed, the physician inquired as to whether we knew if there was any information available about growth rates in kids with Stickler's.  (I think he was hoping that those with SS quit growing earlier than "normal" kids, and therefore removing Graham's growth plate at age 14 would not have any impact on his final adult height.)  I told him that I was unaware of any such info.  I posted a query to the list serve and received no responses.    SO, what Graham would like to do for his project is to gather height statistics from those with Stickler's.  We are hoping that many of you track the annual height of your child, had your height recorded by your parents annually or that your doctor's office would have that info.  He will not need the actual data until year-end, but I wanted to send out this preliminary message to see how many of you might be willing to participate.  Otherwise, he should pick another project!   Thanks much for your consideration!  And I hope all is well with you and that we see you in Rochester for next year's conference! “

 

Conference 2007

Each year, the location of the next conference is voted on by partic-ipants of the annual meeting. The winner for 2007 is Rochester. We already have Martin Snead and Dr Pete Rose as speakers! Mayo Clinic has donated our meeting place. A great hotel has been reserved and We hope to see you there. Start saving now!

 

 

Conference AID

The SIP Board is making a special effort to help persons come to our annual conference. We may have funds for airfare next year, if the resources below do not work for you. We want to work with any and all to get you to the conference. Please contact Pat if you have thought “Gee, I would go, but for the cost.” PLAN NOW to join us in 2007

 

Conference Aid Help

1) Often a case worker can find funding for a parent to attend an educational conference locally. 2) See www.patienttravel.org for financial help with airfare for the conference, or call 1-800-296-1217. Please contact sip@stickler.org for Conference aid. information.

 

2007 NEWS

Besides our great speakers and our great meeting place, we are working on a Friday CLINIC at Mayo. More details will be in the March newsletter, but if you are interested in the clinic Friday, let me know and make your trip plans to be there a day early. This will not be FREE, it will be billed to insurance. But, it will be the opportunity of a lifetime to see the specialists you want, all in one day!

 

 

Film Premier at 2006 Conference

We débuted the FIRST EVER Stickler syndrome video at the Omaha conference. Many scenes for the video were shot at Orlando conference last year and our speakers were interviewed. Kim and her crew used experts in Canada and England, also. Dr Stickler is in many of the clips.

Videos can now be ordered through SIP. Please send $10 (That is our cost.) for a DVD format of the first video, to SIP, 15 Angelina, Augusta KS 67010. (USA addresses only) Please consider adding a $10 donation toward the next video (for physicians). If you live in another country, please go to the website************

If you ever wished you could just do something to help people know about Stickler syndrome, now is your chance. New films will only be produced as the money is available.

SIP is supporting Kim Barwise in her project to produce the documen-taries about Stickler syndrome. Donations can be made though SIP and are tax deductible. You can contact Kim at: k.barwise@rogers.com

 

Video Donations

Don and Cheryl Pratt

 

A Note from Kim

“Hello there everyone. The Stickler video website is now live; www.sticklervideo.org. I hope this helps with distribution of the video and accessibility of Stickler information.

This is one small Christmas wish accomplished. I wish all of you and your families a very healthy and happy Christmas and New Year!

Keep me informed of any changes to your information as it is seen on the site. Hopefully this helps with donations as well. Thanks. Kim”

Contributions Recognized

Since the last newsletter:

Don Engels

Susan Philibert

Mamatha Girish

Seth Hyman

Friends of Melinda Dale

Robert Fan

Augustus Fulk

Dennis Marker

Fiend of Teri Schwartz

Diane Weiss

Robert Engel

 

Also, we want to recognize a special effort of Sammy Vallier. She, with her family, put together a garage sale. She got friends to donate items and made $164. She tells us that the teens at the 2006 conference talked about ways to make money to get more kids to the next conference. So, this money, plus other contributions, will be set aside to aid teens to the 2007 conference. Please help us honor Sammy and our other kids by contacting SIP for funds to get your teen to Rochester!

 

SIP SCHOLARSHIP

Dr. and Mrs. Stickler 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. Applications are due June 1 and the winner is announced at the annual conference.

 

 

SIP News

As you may remember, the board is working with our webmaster on the web site. We asked for any thoughts and suggestions you may have. As part of this “modernization”, SIP will have a new phone number. It is 316-259-5194. Please use the new number to contact SIP.

Another project, done by the Jan Helfer, is a brochure to aid physicians to recognize and diagnose Stickler syndrome. Up to 4 brochures can be sent to you, to give to your physicians. However, we would like to keep track of the physicians you are giving the brochures to. So, please include names and addresses with your request. Jan set up a new email for brochure distribution: sipbrochure@yahoo.com

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

 

 

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

VOLUNTEERS

The board of Stickler Involved People is looking for people willing to do some small tasks. We need someone to:

1. Look into HOW people can donate their airfare miles, so we can use

them for conference attendees and set that system up.

 

2. Comply a list of all the CHILDREN'S" hospitals in the US, and a contact person's name. We would like to send brochures AND to know when they have conferences.

 

3. Be the volunteer who deals with Perkins Restaurants and their fund

raiser project. This would involve only receiving requests for gift

certificates and sending them out. This could be done through our

address, like the Wendy Hughes books we sell. (WE GOT A VOLUNTEER FOR THIS AND YOU WILL HEAR MORE SOON.)

4. (not so little of a project, maybe) Grant research, a person who hunts and searches for grants that SIP would qualify for. (The board has a lot of projects we would love to discuss with anyone who can help.) (WE GOT A VOLUNTEER FOR THIS AND IT IS NOW A “WORK IN PROGRESS”)

These will be first come, first appointed projects. If you are

interested, please contact me at SIP@sticklers.org I will be glad to answer any questions. Some of these are VERY simple projects.

Also, if you have thought of little projects that SIP can be involved in

(things that further our goals of educating doctors and lay people),

please let me know and I will run them by the board. If you have any

special skill to share, let me know.

Announcement

Anyone interested in making an appointment at the Stickler Syndrome Clinic at Mass. General Hospital should send their contact information (name, address, phone number, E-mail address and insurance information) to:

Ruth Liberfarb, MD, PhD
c/o Genetics and Teratology Unit, Warren 801
Mass. General Hospital
55 Fruit St.
Boston, MA 02114
or E-mail her at:
rml@massmed.org.
 

Christmas is Coming

Please remember to do all your on-line shopping by signing on to www.igive.com FIRST!

Even planning trips through igive.com can earn SIP up to 2% of your purchase. This costs you nothing and has earned SIP over $700, used for conference aide. If you have not tried it, go to www.igive.com , enroll, and give Stickler Involved People as your charity. SIP gets a % of all you spend and it costs you NOTHING!

 

Letters we LOVE:

"Thank you very much for sending the DVD on the Stickler Syndrome.  I was very impressed with the quality of this production and your Group has to be congratulated for having made such a fine teaching product.  I found it particularly helpful to listen to the families and see the children who are known to have Stickler Syndrome.  The quality of the images on the screen is as well excellent.   With kindest regards, Charlie Williams.” (one of the speakers at Orlando Conference)

 



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