Coffin-Lowry Syndrome Foundation

Welcome

The purpose of the Coffin-Lowry Syndrome Foundation (CLSF) is to provide a clearinghouse for information on Coffin-Lowry Syndrome (CLS), and to provide families affected by CLS a general forum in which to exchange information, ideas and advice. CLSF provides family matching services, telephone support, an online discussion forum, an informational database and publishes a newsletter, CLSF News. The newsletter is available in hard-copy free of charge to members. The online discussion forum is restricted to families, caregivers, teachers and medical professionals who have direct connections with individuals who have Coffin-Lowry Syndrome.

Why apples?

Apples are found throughout the world, and their symbolism varies by culture. Symbolic meanings of apples include knowledge, feminine beauty, immortality, rebirth and peace. American folklore tells of Johnny Appleseed who dreamed of a landscape beautified by apple blossoms and a country where no one would go hungry.  At CLSF, we hope no one will go hungry for information and support.

Mission Statement

The mission of the Coffin-Lowry Syndrome Foundation (CLSF) is to provide information and support for families, caregivers, relatives, educators and medical professionals affected by, or working with, individuals diagnosed with Coffin-Lowry Syndrome.

Vision Statement

Coffin-Lowry Syndrome Foundation seeks to become a visible group in the medical, scientific, educational and professional communities in order to facilitate referrals of newly diagnosed individuals, and to encourage medical and behavioral research in order to improve methods of social integration as well as treatments options for individuals with Coffin-Lowry Syndrome.

– Alicia, IL

The CLSF group has been monumental for my family. Ryan was the only boy in Southern IL at the time of his diagnosis. Because of the foundation, I’ve made friends across the country, and I can stay connected both with them and the latest information regarding CLS.

– Heather, OH

The foundation has given us a FAMILY we did not know we needed in a world full of people where we feel isolated and alone. Finding the foundation has made us feel we belong. Everyone has been helpful in giving us a voice and becoming an expert on our son where there isn’t one. We were fortunate enough to spend time with everyone and build strong connections. When you talk with someone in the foundation or visit with them, no words need spoken, they just understand you, and that is the best feeling! The families in the foundation have been amazing!!!!!!

-Sue, OH

The Foundation has served as a clearing house for information that may be common to those who are diagnosed with CLS. This is such a great connection to know you are not alone in this journey because most medical professionals do not see many kids/adults with CLS. The Newsletter is another great resource to assist parents. Having recently hosted the 2024 US Family Gathering the monetary support from the Foundation support was invaluable!

-Abbey, IL

‘The CLS foundation was the first and only place we could turn to for information, resources, and support after our daughter’s diagnosis.  The foundation gives CLS a real face and spirit, with pictures, stories, gatherings, and giveaways.  It has connected us to other families with this rare disorder and really provides a sense of belonging in a medical world where you are largely unknown. We are so grateful for the foundation!’

– Phebe

‘Reading the messages brought back memories of how desperate I felt when Shane was diagnosed and was very thankful for the existence of this foundation where I found much support, help and comfort.’

-Sharyn, Australia

‘I am so grateful for this foundation. I really don’t know what I would do without it.’

-Corrine, Australia

‘Received (newsletter) today in Australia. Thank you for all your research, information and time putting this together and providing. My son Evan was so excited today to check our letter box for it. Then read and look at all our friends who look the same.’

-Heather, OH

‘It was truly a blessing to meet everyone (at the CLS Family Gathering).Thank you for welcoming us with open arms.’

-Jeannette, FL

‘Brianna had a wonderful time meeting new sisterhood friends that all have something in common! Amazing so many were so close in age and bonded so well! Looking forward to a CLS girls gathering one day!’

-Karen, PA

‘Lauren and I attended our first ever CLS family gathering in Toledo Ohio last weekend. This was the best decision we could ever make. Lauren thought she was the only one with her condition! Lauren made some new friends and is just overall happier now! Thank you to all who organized this event and to all who attended from the bottom of our hearts!’

-Deann, AR

‘When I found the foundation’s original website I discovered all these wonderful families who love someone with CLS! (Thank you, Mary!) It opened a world of expert knowledge from those who knew more than a geneticist about the possibilities with this diagnosis. You all have been such a support for our family in the tough times, and celebrate the small milestones with us!
I enjoy the newsletter, introducing the new members, and appreciate the research updates.
The Family Gatherings are a highlight for us, we love seeing you in person, and being in a room with others who “get it” and roll with the behaviors is a breath of fresh air.’

-Aggie, FL

‘The foundation has helped me feel less isolated & part of a wonderful, loving, large extended family that understands the lows & highs of walking this journey. When my daughter & grandson were newly diagnosed with CLS I was numb & helpless. The families’ experiences shared on the foundation’s website made a huge difference in my life & made me feel I was not all alone in my struggle.’

-Denise, NC

‘We received Chase’s CLS diagnosis when he was four years old.  While waiting to meet with specialists, we researched and contacted the CLS Foundation founder, Mary Hoffman.  She was so kind and reassuring.  The newsletters were comforting and provided a way to connect with other parents.  The information provided was more timely and relevant than what I received through his doctors and specialists.  Our son is now 31 and meeting other families through the CLS Family Gatherings has opened up a whole new world of development and possibility for us.  This network is a “family” who is there not only to reassure but to offer advice and inspiration and help our kids thrive in their special way.’

Register with the Coffin-Lowry Syndrome Foundation

The Coffin-Lowry Syndrome Foundation runs a private Facebook group with over 500 members impacted by CLS and from 37 countries in the world. Join now and connect with others like you in our online community of families impacted by CLS to seek and provide support, ask questions, find resources, and learn how to advocate.

Parents who are members of the online closed/private support forum (Coffin-Lowry Syndrome Foundation Facebook group) report that just being able to talk to other CLS families who know exactly what they are going through is extremely helpful.

Episode 47 – Coffin Lowry Syndrome Foundation

This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you’ll hear an interview with Theresa Moxley, President of the Coffin-Lowry Syndrome (CLS) Foundation.  Theresa sits down with Sanford Research personnel and discusses CLS to include the role the Foundation plays in assisting families.  She also discusses the importance of families with CLS to register with CoRDS.  In this podcast, Theresa helps to raise awareness of CLS one of 7,000 rare conditions.  Rare conditions affect 1 in 10 people worldwide.