Honoring Our Love: Navigating Grief During the Holidays A Supportive Gathering for Parents Who Have Lost a Child with CdLS The holiday season is often described as a time of joy, celebration, and togetherness. But for parents who have experienced the profound loss of a child, these months can also bring waves of grief, longing, […]
We all have differing experiences as we think about the future. The best way to learn is from others. Le’t hear some great ideas and pitfalls to avoid. Share the best things to try, and what you might avoid. This is a HOPE session, and you will learn IT IS possible, but that you are […]
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. The November Support Group topic will be resources. Thursday, November 13, 2025 7:00 – 8:15 p.m. ET 📍Topic: Resources We believe no parent should walk this path alone at the CdLS Foundation. […]
Health Insurance is changing …are you ready? Join NORD on November 19 at 2:00PM EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the care and medicines you need. […]
Use GivingTuesday to Support the CdLS Foundation! Mark your calendars for December 2. It is the annual celebration of GivingTuesday, a global movement that inspires people to give, collaborate, and make a difference. This special day is all about turning generosity into action, and it’s the perfect opportunity to support the CdLS Foundation. Whether you […]
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, December 4, 2025 🕖 7:00 – 8:15 p.m. ET We believe no parent should walk this path alone at the CdLS Foundation. As caregivers, you are the backbone of our […]
How did we do? We will review the different peace of mind points, evaluate our successes and failures and set some goals for next year. HOPE is important on the journey to PEACE OF MIND! Let’s recognize our successes and pat ourselves on the back for them. Let’s identify our areas to concentrate on so […]
We know how much you carry every day — appointments, school meetings, medications, behaviors, and the emotional weight of loving someone with CdLS. It’s a lot, and you don’t have to carry it alone 💙 Each month, the CdLS Foundation hosts virtual support groups for parents of children and adults with CdLS. Our next CdLS […]
Hosted by Courageous Parent Network (CPN) Receiving a genetic diagnosis (or lacking a diagnosis) for a child can be a profoundly life-altering experience for families. In this session, Mary-Frances will draw on her extensive experience working with parents and caregivers to explore the complex emotional responses that emerge as families learn to live with a […]
The next CdLS Foundation Parent Support Group is scheduled for February 5, and we’d love to welcome you. 📅 February 5, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Caregiver Burnout This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other […]