81. Health Information Resource Database: Stickler Involved People Stickler Involved People (SIP) is a national network whose purpose is to increaseawareness of Stickler syndrome by educating medical professionals, educators http://www.health.gov/NHIC/NHICScripts/Entry.cfm?HRCode=HR2507

82. Wauu.DE: Health: Support Groups: Conditions And Diseases: Facial Differences: St Wauu.DE Health Support Groups Conditions and DiseasesFacial Differences Stickler s syndrome. http://www.wauu.de/Health/Support_Groups/Conditions_and_Diseases/Facial_Differen

Home Health Support Groups Conditions and Diseases ... Facial Differences : Stickler's Syndrome Search DMOZ-Verzeichnis: All Categories Categories Onlye Links: Dave Hawley's Stickler Syndrome Page Indexes on-line information related to Stickler's Syndrome. http://hometown.aol.com/dhawley/stickler.html Stickler Involved People Medical information, networking, news and updates. http://www.sticklers.org/ Stickler Syndrome Support Group Information and support for people affected by Stickler Syndrome. UK-based, but with international links. http://www.stickler.org.uk © 1998- 2002 Ein Service von Wauu.de UserNet.DE Linktip: MnogoSearch.ORG Map TopTen TopTen eng Aktuelle Linktips Mozilla 1.7 RC 1 Basteln 0190 Warner Free Rund ums Rad ... Fantasy - Shop Webmaster-Links Webspace Free Subdomain Service Merchandise Fun SUMA - Forum ... Abmahnungen œber Wauu Regeln Webmasterservice Impressum b

83. Spondiloyepiphyseal + Spondylometaphyseal Dysplasia Page - Latest Updates Updated Scholarships page. Added a scholarship for people with Stickler ssyndrome http//www.sticklers.org/sip/scholarship.html. http://www.ksginfo.org/whatsnew.html

Most Recent Changes and Additions May 2004 New section on healh care acronyms in Medical Dictionary page. Added two new Skeletal Dysplasia Centers : New York and Texas. Updated Scholarships page. Added a scholarship for people with Stickler's syndrome: http://www.sticklers.org/sip/scholarship.html Updated chairs section in the Adaptive Living page. A new page: KSG Anti-bullying page , a page to help children who are being bullied, help bullies stop, and parents and teachers handling bullying behavior. American Self-Help group on-line Sourcebook: http://centersite.org/selfhelp/ to the Do Your Own Research talk to other families section. National Center for Physical Activity and the Disabled list of summer camps: http://www.ncpad.org/Factshthtml/summercamps.htm to Children's Summer Camps section. Reorganized Newsletters and Events page. http://www.patienttravel.org/ to the medical travel section. April 2004 Added scholarships travel funds for conferences , Informed consumer's guide to funding assistive technology, http://www.abledata.com/Site_2/funding.htm

84. Kniest And Spondyloepiphyseal And Spondylometaphyseal Dysplasia Page Medical Inf K). WagnerStickler s syndrome. Other stickler.html. This site has comprehensivemedical links about Stickler syndrome. Top of page. http://www.ksginfo.org/info.html

Information about Kniest, SED, and SMD Please click on the condition you want to learn more about. Find a Skeletal Dysplasia (dwarfism) clinic Kniest Sydrome Metatropic Dysplasia Type II : See Kniest (Kniest is called Metatropic Type II by accident really and is very different from metatropic dwarfism itself.) Spondyloepiphyseal dysplasias (SED) : SED Congenita (SEDC), SED Tarda, SED X-Linked, SED-Toledo type. Spondylometaphyseal dysplasias (SMD) : SMD Corner Fracture Type, SMD Kozlowski Type (SMD-K) Wagner-Stickler's Syndrome. Other links : Ulna Metaphyseal Dysplasia Syndrome, Spondyloepimetaphyseal dysplasia type Strudwick (SEMD) also known as spondylometaepiphyseal dysplasia type Strudwick (SMED) Specific Medical Conditions common to people with Kniest, SED, and SMD: Pierre Robin Syndrome Back Care Hip Problems Knee problems Problems with IV placement and tips for surgeries. Overheating Please note that not all complications listed will necessarily occur. Where do all these names come from? See the Medical Terms page.

85. Canadian Chapter Of Stickler Involved People What is Stickler syndrome? *. Stickler syndrome is a relatively common connectivetissue disorder. Stickler syndrome Links *. Stickler Involved People http://www.barbspage.com/stickler.html

UPDATED May 23 2004 Canadian Chapter of Stickler Involved People Our Mission Our goal is to educate Canadians, as well as the medical community, about Stickler Syndrome, a connective tissue disorder; to provide detailed information, support and resources to Canadian families and individuals suffering from Stickler Syndrome. We offer current medical information, ways to cope, networking, supportive listeners, newsletter, and updates for Physicians. What is Stickler Syndrome? Stickler Syndrome is a relatively common connective tissue disorder. It is characterized by mild to severe myopia; complicated retinal detachments and/or vitreal degeneration at an early age; cleft palate; small lower jaw; progressive sensorineural hearing loss; hyper and hypo mobility of joints; various disabilities resulting from often unexplainable joint pain and degeneration; variable epiphyseal dysplasia; enlarged or "swollen" joints, particularly wrists, knees and ankles. Stickler syndrome should be considered in any infant that is displaying signs of Pierre Robin syndrome or sequence, along with enlarged joints, myopia

86. Canadian Chapter Of Stickler Involved People Stickler syndrome is an important issue for us our son Tyler is affected bythis connective tissue disorder, as well as SEMD or Spondyloepimetaphyseal http://www.barbspage.com/

Welcome to the Shea's And the Canadian Chapter of Stickler Involved People Hi, and welcome to our little place on the web! We live just outside of Montreal, Canada (Yes, contrary to what SOME may believe it is still Canada!) We have created this site to hopefully pass on some important (and some not so important) information. Stickler syndrome is an important issue for us our son Tyler is affected by this connective tissue disorder, as well as SEMD or Spondyloepimetaphyseal Dysplasia. You can find more about Sticklers by following the links. We are actively involved in Standardbred horse racing here in Montreal. Stickler Syndrome Standardbred Canada Oral Deaf Education Igive ... Our Family : What we love (our kids!) and what we like to do Barb's Discovery Toys Business Page : I have a home-based business - selling Fun! Please feel free to learn more about the great products from Discovery Toys. This Stickler's WebRing site owned by Barb Lockey Previous 5 Sites Previous Next ... List Sites

87. Colosip2000 Welcome to Colorado SIP 2002. A local Colorado support group for those inflictedwith Stickler syndrome. Looking for information. About Stickler syndrome? http://hometown.aol.com/coach001/page1.html

Main Other Support htmlAdWH('7002568', '234', '60'); Welcome to Colorado SIP 2002 A local Colorado support group for those inflicted with Stickler Syndrome National Stickler Involved People Canada Chapter of SIP Contact Rick (National Assistant Coord.) Colorado SIP Coordinators Rick(L) and Randy(R) heading to the National SIP Conference. Contact Randy (Web Page creator) Looking for information About Stickler Syndrome? What We Do Know About Stickler Syndrome National Institute of Health (search Sticklers or tissue dissorders) National Institute of Dental and Craniofacial Research (search for Stickler Syndrome) Dave Hawley's Home Page (lots of links) Global Doctors Guide (good link to help locate Drs.) Colorado Sip Announces that it will host 2005 National Conference (read all about it) 2002 National Conference Report (coming soon) Just for Kids Siemens Hearing Aids (my favorite Hearing Aid, very leading edge company) last updated 10/10/02 page created with Easy Designer

88. Basic Genetics - Causes Of Hearing Loss - My Baby's Hearing Stickler syndrome The hearing loss in Stickler syndrome is usuallyconductive, although some losses may be mixed or sensorineural. http://www.babyhearing.org/HearingAmplification/Causes/genetics.asp

Causes of Hearing Loss Basic Genetics What Are the Most Common Forms of Genetic Hearing Loss? Of the 50% of the genetic forms of hearing loss, an estimated 70% are due to recessive causes, about 15% have a dominant cause; and the remaining 15% include all the other forms of inheritance. GENETIC RECESSIVE 70% NON-GENETIC AND UNKNOWN DOMINANT 15% OTHER GENETIC 15% Genetic scientists subdivide genetic hearing loss into two general categories: "Non-Syndromic" (meaning hearing loss and nothing else) and "Syndromic" (meaning hearing loss with other clinical findings). By far, the more common is Non-syndromic hearing loss which includes 2/3 of all genetic hearing losses. SYNDROMIC NON-SYNDROMIC RECESSIVE RECESSIVE NON-GENETIC AND UNKNOWN DOMINANT DOMINANT OTHER GENETIC OTHER GENETIC What is the Most Common form of genetic hearing loss?

89. Support Information Information and support for individuals affected by Stickler syndrome.SturgeWeber Foundation, 800-627-5482, www.sturge-weber.com. http://dentistry.ucsf.edu/cranio/support.htm

About Face A support and information network concerned with facial differences. American Cleft Palate-Craniofacial Association 800-24-CLEFT www.cleftline.org 24 hour parent information and support line A parent run support network for families affected by Apert syndrome California Children's Services 415-554-9952 (SF) Medical insurance for middle and low-income children with craniofacial anomalies and other chronic conditions. (Available in all California counties.) Changing Faces www.changingfaces.co.uk "Concerned with the social and emotional consequences of facial disfigurement." www.childrenswishes.org Pen-pal program for children with disabilities. Children's Craniofacial Association www.ccakids.com

90. The Hypermobility Syndrome Association :: Index Conditions EhlersDanlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, Sticklerssyndrome, Fibromyalgia, Arthritis, Hypotonia, Dislocations, Depression. http://www.hypermobility.org/phpBB2/index.php

The Hypermobility Syndrome Association Welcome! If you use these boards a lot why not support us and become a member Home FAQ Search Memberlist Usergroups Register Profile Log in to check your private messages Log in The time now is Thu Jun 03, 2004 3:05 am The Hypermobility Syndrome Association Forum Index View unanswered posts Forum Topics Posts Last Post Important Stuff! Announcements If you are new to the boards please read! Wed Oct 01, 2003 6:05 pm Katt Diagnosis Getting the correct diagnosis and finding a good doctor. Moderators Katt nickb Azazel Wed Jun 02, 2004 6:29 pm ginnysanter Related Conditions Ehlers-Danlos Syndromes, Marfan Syndrome, Osteogenesis Imperfecta, Sticklers Syndrome, Fibromyalgia, Arthritis, Hypotonia, Dislocations, Depression. Moderators Katt nickb Azazel Tue Jun 01, 2004 8:36 pm laxbear Managing HMS Physiotherapy and Occupational Therapy Physiotherapy, bracing and strapping. Occupational therapy, splints and assistive devices. Moderators Katt nickb Azazel Wed Jun 02, 2004 4:44 pm peekay Pain Management and Medications Topics relating to pain management techniques and conventional drug therapies . Moderators Katt nickb Azazel Mon May 24, 2004 4:19 pm

91. NAGER & MILLER SYNDROMES mdff@mdff.org. http//www.mdff.org. Werdnig-Hoffman Disease. STICKLER syndrome.Stickler Involved People (SIP). 15 Angelina Dr. Augusta, KS 67010. (316) 775-2993. http://www.as.wvu.edu/~scidis/organizationN_S.html

Foundation for Nager and Miller Syndromes (FNMS) 1827 Grove St. #2 Glenview, IL 60025-2913 (847) 724-6449 (fax) fnms@interaccess.com http://www.fnms.net -Acrofacial Dysostosis, Nager Type NEUROFIBROMATOSIS National Neurofibromatosis Foundation John Radziejewski Director of Public Education 95 Pine St., 16th Floor New York, NY 10005 (212) 747-0004 (fax) nnff@nf.org http://www.nf.org Neurofibromatosis, Inc. 9320 Annapolis Rd., Ste. 300 Lanham, MD 20706-2924 (301) 918-0009 (fax) nfinc1@aol.com http://www.nfinc.org -Von Recklinghausen Disease NEUROLOGICAL DISORDERS Association for Comprehensive Neurotherapy Latitudes PO Box 210848 Royal Palm Beach, FL 33421 (561) 798-9820 (fax) acn@latitudes.org Children's Neurobiological Solutions 1726 Franceschi Rd. Santa Barbara, CA 93103 (866) 267-5580 or info@cnsfoundation.org http://www.cnsfoundation.org The Colleen Giblin Foundation Meg Minassian, Exec, Dir. 690 Kinderkamack Rd., Ste. 104 Oradell, NJ 07649 (201) 262-6442 (fax) cgf01@aol.com http://www.colleengiblinfound.org NEUROTRANSMITTER DISEASES, PEDIATRIC Pediatric Neutransmitter Disease Association 6 Nathan Dr.

92. Links Translate this page SIP Stickler Involved People Distribute information and experiencesabout Stickler syndrome and those it affects. Exercising in http://www.pfd-a.com/links.html

LINKS // Life Jacket-Adapted PFD-A.COM Notre association, "un fauteuil à la mer" qui oeuvre AQUATIC ACCESS INC . offers a full line of water-powered lifts, providing disabled access to in-ground and above-ground pools and spas. http://www.aquaticaccess.com/lto.htm magique! Infinitec / UCP Chicago Infinite potential through assistive technology South Portland Alpha One has helped thousands of people with disabilities live more independently in all aspects of their lives 5p - Society Cri du Chat Syndrome ALACD ARPA ARPA is proud to be a key partner in the Alberta initiative of the Active Living Alliance for Canadians with a Disability Spina Bifida Association of America Pennsylvania Epilepsy Ontario http://epilepsyontario.org/ client/EO/EOWeb.nsf/web/ Summer+Fun Guelph Services for Persons With Disabilities Guelph Services for Persons With Disabilities BDSRA Batten Disease Support and Research Association SIP Stickler Involved People Distribute information and experiences about Stickler Syndrome and those it affects. Exercising in water works well for arthritis sufferers.

93. Health: Support Groups: Conditions And Diseases: Facial Differences: Stickler's BN23.com Stickler s syndrome. Search Dave Hawley s Stickler syndromePage Indexes online information related to Stickler s syndrome. http://bn23.com/portal/Health/Support_Groups/Conditions_and_Diseases/Facial_Diff

Stickler's Syndrome Search Health Support Groups Conditions and Diseases Facial Differences ... Dave Hawley's Stickler Syndrome Page Indexes on-line information related to Stickler's Syndrome. http://hometown.aol.com/dhawley/stickler.html Stickler Involved People Medical information, networking, news and updates. http://www.sticklers.org/ Stickler Syndrome Outreach - Oregon Reaching out to those in Oregon who are affected by Stickler's Syndrome. http://oregonsticklers.homestead.com Stickler Syndrome Support Group Information and support for people affected by Stickler Syndrome. UK-based, but with international links. http://www.stickler.org.uk Sitemap Add a Site Modify Link Contact Us

94. Coalition For Heritable Disorders Of Connective Tissue Stickler syndrome – (Stickler Involved People, Augusta, KS) – Stickler syndromeis a genetic disorder which affects connective tissue including the joints http://www.chdct.org/members.htm

More than one half million Americans are estimated to be affected by one of the 200 known conditions categorized as heritable disorders of connective tissue. Although each disorder, such as those described in this brochure, has a common denominator - connective tissue disorder - most of them as yet have no known cause or effective treatments. The following conditions are represented by the member agencies of the Coalition for Heritable Disorders of Connective tissue: Chondrodysplasias Ectodermal Dysplasias Ehlers-Danlos Syndrome (EDS Epidermolysis Bullosa (EB) Fibrodysplasia Ossificans Progressiva (FOP) Mitral Valve Prolapse (MVP) Osteogenesis Imperfecta (OI) , Denver, CO, and PXE International, Inc P.O. Box 27, Highland Park, IL 60035 CORPORATION FOR MENKES DISEASE (CMD) 5720 Buckfield Ct., Ft. Wayne, IN 46814 DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA(DebRA) 40 Rector Street, Suite 1403, New York, NY 10006

95. Health Library - Stickler syndrome. Important It is possible that the main title of thereport Stickler syndrome is not the name you expected. Please http://12.42.224.148/Library/HealthGuide/IllnessConditions/topic.asp?hwid=nord42

96. Excite España - Directorio - Stickler\'s Syndrome 1. Dave Hawley s Stickler syndrome Page, Indexes online informationrelated to Stickler s syndrome. 3. Stickler syndrome Support Group, http://www.excite.es/directory/Health/Support_Groups/Conditions_and_Diseases/Fac

Chicas El Tiempo Juegos Postales ... Directorio Busca con Excite Web Videos Noticias Directorio Excite - el mejor en el web! WEB VIDEOS NOTICIAS EL DIRECTORIO ... Health Stickler's Syndrome Postales Viajes El Tiempo Chicas 3 sitios en la categoria Stickler's Syndrome Dave Hawley's Stickler Syndrome Page Indexes on-line information related to Stickler's Syndrome. http://hometown.aol.com/dhawley/stickler.html Stickler Involved People Medical information, networking, news and updates. http://www.sticklers.org/ Stickler Syndrome Support Group Information and support for people affected by Stickler Syndrome. UK-based, but with international links. http://www.stickler.org.uk Ver tambien Top: Health: Conditions and Diseases: Genetic Disorders Top: Health: Conditions and Diseases: Rare Disorders Sugiere un sitio web Open Directory Project Excite Network: Excite Deutschland Excite France Excite Italia Excite Japan ... Excite UK

97. Stickler's Syndrome Stickler s syndrome Directory Guide to Stickler s syndromesites on the internet. Stickler s syndrome. http://www.directory.net/Health/Support_Groups/Conditions_and_Diseases/Facial_Di

Stickler's Syndrome Directory: Guide to Stickler's Syndrome sites on the internet. Search Engines: Google Yahoo MSN FindWhat ... City Guides Stickler's Syndrome Health Support Groups Conditions and Diseases Facial Differences ... Stickler's Syndrome Websites Stickler Involved People http://www.sticklers.org/ Medical information, networking, news and updates. Dave Hawley's Stickler Syndrome Page http://hometown.aol.com/dhawley/stickler.html Indexes on-line information related to Stickler's Syndrome. Stickler Syndrome Support Group http://www.stickler.org.uk Information and support for people affected by Stickler Syndrome. UK-based, but with international links. Stickler Syndrome Outreach - Oregon http://oregonsticklers.homestead.com Reaching out to those in Oregon who are affected by Stickler's Syndrome. Got eight minutes? Join in and participate in Stanford's Web Credibility Project's latest study. Help build the largest human-edited directory on the web. Submit a Site Open Directory Project Become an Editor The content of Directory.NET

98. Journal Sometimes, kids with PRS can also have an underlying genetic syndrome present,and one of the most common related syndromes is Stickler syndrome. http://home.comcast.net/~garland_neal/journal.htm

Jaw Distraction Journal Week 3 - (Feb.29 - Mar.6 '00) We have an appointment on March 9th with the General Surgeon (Dr. Meier), to discuss the G-tube. Garland Neal is doing good, his swelling is almost all gone and you can now feel the hardware that is screwed to his jaw bone. We are in the process of getting our insurance to approve the in-home speech and oral/motor threapy twice a week. This therapy will help Garland Neal master swallowing and tongue control. click here to learn more about Stickler Syndrome. Some experts will say that every baby born with PRS has a genetic syndrome associated with it and that there is no such thing as "isolated PRS". At this point, I'm not sure what I think. Garland Neal also had his 4 month check-up (a little late), he got his immunizations and is healthy for now. We are getting ready for April 11th.... surgery date! Garland Neal also broke his all time record this week by pulling out his NG tube 4 times. I can't wait for that G-tube, he won't be able to pull it out as easy, which means less stress for both of us. :-) Week 10 - (Apr.19 - Apr.25 '00) Things are getting better everyday....Garland Neal had his follow-up visits this week. Dr. Hobar said everything looked great and we don't have to come back for THREE months...wow! Dr. Meier wants to see us on May 11th to place the button on his feeding tube. Right now, until the site heals, there is a long tube coming out of his belly. Four weeks after placing the tube, they replace it with a short tube that opens with a button and is flush with his body. He will finally be able to play on his tummy once we get the button. April 28th is the big day.....that's when we will try the cap on Garland Neal's trach..I'm getting nervous, but I think he'll do fine because he's tolerating the Passy Muir valve so well now.

99. Blind World - Disease-specific Organizations. Provides information and support to people with Stickler syndrome, a connectivetissue disorder that affects bones and joints, the heart, eyes, and ears. http://www.home.earthlink.net/~blindworld/LINKS/disease.htm

Blind World Disease-specific Organizations. (The) Achromatopsia Network. P.O. Box 214, Berkeley, CA 94701-0214. E-mail: Editor@achromat.org URL: http://www.achromat.org AMD Alliance International. 1314 Bedford Avenue, Suite 113, Baltimore, Maryland 21208. URL: http://www.amdalliance.org/ American Autoimmune Related Diseases Association, Inc. (AARDA). 22100 Gratiot Avenue, East Detroit, MI 48021. (800)598-4668 (Literature Requests). URL: http://www.aarda.org/ P.O. Box 15247, Chattanooga, TN 37415-0240. Toll-free: 1-800-723-4238. URL: http://www.behcets.com American Health Assistance Foundation. 15825 Shady Grove Road, Suite 140, Rockville, MD 20850. (Phone: 301) 948-3244. Toll-free: 1-800-437-2423. URL: http://www.ahaf.org Association for Macular Diseases. 210 East 64th Street, New York, NY 10021. Phone: (212) 605-3719. URL: http://www.macula.org/ Benign Essential Blepharospasm Research Foundation. P.O. Box 12468, Beaumont, TX 77726-2468. Phone: (409) 832-0788.

100. Cleft Advocate - Upcoming Events! (732) 2388803 or toll-free 1-866-VCFSEF5. Eighth American Stickler SyndromeConference DoubleTree Club Hotel. July 9-11, 2004 Chicago, O Hare Airport. http://www.cleftadvocate.org/events.html

@import url(http://www.homestead.com/~media/elements/Text/font_styles.css); National Conferences and Local/Regional Events To add an event to this page, send all pertinent information to debbie@cleftadvocate.org Your Role In Advocacy cleft Advocate Your On-Line Source for Education and Inspiration! Home Our Mission Our Projects 501(c)3 Status ... Site Map Upcoming Events Learn More Resources Insurance Advocacy ... CPF's "Miles for Smiles" Race Saturday, May 22, 2004 http://www.unc.edu/visitors/ Contacts: Elizabeth Kramer, Kerry Callahan Phone: 202.444.5919 or 919.358.6282 Email: cpfmilesforsmiles@yahoo.com kerry.callahan@duke.edu NATIONAL EVENTS Tube Feeding with Love This workshop is presented by Marsha Dunn Klein, MED, OTR/L and challenges the participant to look from the medical procedural aspects of tube feeding to the family, mealtime and interaction aspects of tube feeding. Chicago, IL Denver, CO Honolulu, HI Boston, MA Anchorage, AK Houston, TX Cher's Family Retreat Contact Jana Butera for more information: June 24-27, 2004, Tempe, AZ LOCAL/REGIONAL EVENTS INTERNATIONAL EVENTS Send information to debbie@cleftadvocate.org

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