Newly Diagnosed

A message from Theresa Moxley, President Coffin-Lowry Syndrome Foundation

When our son Matthew was diagnosed with Coffin-Lowry syndrome, my husband and I were overwhelmed. We were thankful to finally have a diagnosis but had no idea where to start or how to process the news. It was not until we located other CLS families and reach out to the Coffin-Lowry Syndrome Foundation (CLSF) that we truly started to find answers and hope. We quickly realized we were not alone in our journey.

With the CLS Foundation, you will find a community of people who understand what you are going through. Whether it is connecting you to a local family, educating you at a CLS Family Gathering, or just listening, the CLS Foundation is here to provide you with whatever you need during any point of your journey.

I would love to hear from you and support you in any way that I can. You can email me at CLSFoundation@outlook.com or call 256-684-2480. My family and I are honored to serve this community and look forward to meeting you at a CLS Family Gathering!

– Theresa Moxley

What Now? 

Families sometimes don’t know where to turn or what to do once they’ve received a diagnosis. The good news is that you found the CLS Foundation!  The CLS Foundation has been supporting families for over 30 years. Our network of families is here for you.

Start with the steps below.

1. Register

Register with the Coffin-Lowry Syndrome Foundation

We will add you to our mail list to receive quarterly newsletters. You will also be sent a report of other CLS families who are near you.

Have a specific question and want to contact the CLS Foundation right away? Call 256-684-2480 or email.

2. Visit ‘The First 100 Day Journey with CLS’

This is a guide to navigating the first 100 days after receiving a Coffin-Lowry Syndrome diagnosis. The guide is in a checklist format providing steps you can take to help your child thrive as well as inform you of resources available to assist along the way. 

3. Make a Connection

A rare disease diagnosis can be isolating. Connect with others who understand. 

When you complete the New Parent Registry, you will be emailed a report of other CLS families in your area. Reach out to them. These families will understand services offered in your region such as early intervention, educational questions, insurance/waivers, etc. They have been in your shoes. They will be a great advocate for you and your family.

4. Stay Informed

  • Find out about CLS related events
  • Read the quarterly newsletters containing pertinent articles related to CLS. When you complete the New Parent Registry, you will be emailed a few back issues of the CLSF News (quarterly newsletters).
  • Visit our CLS Foundation Events Page for more opportunities to connect with CLS families.
  • Open our emails when you get them and follow us on social media. 
  • Join our Facebook group

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.

5. Enroll in Sanford Research CoRDS Data Registry

CoRDS is a database that gathers health information about individuals with Coffin-Lowry Syndrome to be accessed by researchers and doctors for the advancement of research, future clinical trials and development of potential treatments. Visit the Patient Enrollment System.

CoRDS is a database that gathers health information about individuals with Coffin-Lowry Syndrome to be accessed by researchers and doctors for the development of future clinical trials and potential treatments. Visit the Patient Enrollment System.

Enrollment in CoRDS: 

  • Helps advance research
  • Helps support future clinical trials