Thank you Pat and Bill Houchin for all you have done for the Stickler Community over the years.

I’m Michael Weamer, CEO of the Marfan Foundation and we welcome the Stickler syndrome community to your new home at the Marfan Foundation! We are so glad to have you here! First things first: please add yourself to our email list so you don’t miss important updates about events, news, etc. Click here to sign up: https://marfan.org/subscribe/

At the Foundation we have long been working to include Stickler syndrome in the information we provide to the public – you’ll find we have a section about Stickler on our website.

We are excited to share that in the months ahead, we will begin offering robust educational programs and support specific to Stickler. For the moment, here are some support programs and events that may be of interest to you. Each of these groups welcomes people living with conditions related to Marfan syndrome, including Stickler syndrome:

Virtual Support Groups (Free, Try Them Out Anytime, No Commitment)

• A Time to Talk: Monday Matters! – Marfan Foundation

• Support for Young Adults with Marfan, VEDS, LDS and related conditions – Marfan Foundation

• Teen Talk – Marfan Foundation

• Teen Game Night – Marfan Foundation

• Kids Club – Marfan Foundation

• Marfan Connect (50+) Support – Marfan Foundation

• Support for Parents/Guardians of Children w/Marfan, LDS, related conditions – Marfan Foundation

• Newly Diagnosed & Those Seeking Diagnosis – Marfan Foundation

• Conexiones: Estamos juntos (impartido en español) – Marfan Foundation

• Pain Management – Marfan Foundation

Walk for Victory Events (Community Events That Are About Meeting New Friends and Being Together)

Find a walk near you! Walk for Victory – Marfan Foundation

Once you have signed up for our email list, stay tuned for updates including a late autumn/early winter Stickler syndrome educational virtual webinar. We will also share information about our in-person events like symposiums.

We can’t wait to meet you!

Michael Weamer, President and CEO, The Marfan Foundation

WELCOME

Welcome to the web site of Stickler Involved People (SIP), the U.S. support group helping those with Stickler Syndrome since 1994.

Stickler syndrome (hereditary progressive arthro-ophthalmopathy) is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, eyes, and ears. This disorder is associated with problems to vision, hearing, bone and joint, facial and cleft palate.

If you are a physician, please visit our Physician’s Overview page for a quick summary of our web site.

Thank you for visiting our site and please feel free to explore and learn from the vast information posted here. Come back as often as you like.

2024 Virtual Conference

SIP Joins Marfan Foundation

Dr. Gunnar Stickler (1925 – 2010) was a pediatrician who made significant contributions to the field of pediatrics and was the first scientist to describe the hereditary condition now named in his honor, Stickler Syndrome. Dr. Stickler went on to co-author more than 200 scientific papers.

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Legal Disclaimer

All the information on this website is published in good faith and for general information purpose only. While every caution has been taken to provide the most accurate information and honest analysis, we do not make any warranties about the completeness, reliability and accuracy of this information. Any action you take upon the information on our website is strictly at your own risk and we will not be liable for any losses and damages in connection with the use of our website.

From our website, you can visit other websites by following hyperlinks to these sites. While we strive to provide only links to useful and ethical websites, we have no control over the content and nature of these sites and the links to other websites do not imply a recommendation for all the content found on these sites.

Please note that some of the articles and graphics on this website may be copyright protected and that all the trademarks are the property of their respective holders and you may download only one copy for personal use. Please be also aware that when you leave our website, other sites may have different privacy policies and terms which are beyond our control.

Stickler Involved People (SIP) is not dispensing medical advice. We encourage you to take any information you find here to your physician, who knows you and your medical conditions best (including the ways Stickler syndrome has affected you).