CdLS Foundation Regional Retreat

The CdLS Foundation National Family Conference model has undergone a transformation to better cater to the needs of our valued families. We are excited to announce that we have created a solution that will make a huge difference. The CdLS National Family Conference will now comprise of a series of Regional Retreats in the East Coast, West Coast, and Central US regions. This new approach is designed to make it more accessible for families to attend, regardless of their budget.

The registration cost is an all-inclusive per-person rate that includes programming such as workshops and “Meet the Experts,” sibling camp, all meals, Camp facilities and activities, and lodging. Individuals with CdLS can attend for free.

We are confident that this new format will foster an environment of learning, sharing, and support among families, and we look forward to welcoming you all to our upcoming Regional Retreats.

The states that make up the East Coast Region include Maine; New Hampshire; Vermont; Massachusetts; Connecticut; Rhode Island; New York; Delaware; Maryland; New Jersey; Pennsylvania; Washington D.C.; Virginia; North Carolina; South Carolina; Georgia; Florida; West Virginia; Ohio; Kentucky; Tennessee; Alabama; and Mississippi.


What to Expect

Join us at Camp Saginaw from September 13-15 for a tranquil weekend retreat with friends who share your unique journey. Nestled in peaceful surroundings, this will be a delightful opportunity to unwind, learn, and be inspired.

Friday night (our welcome night) is the perfect way to kick off the festivities with toasty campfires, s’mores, and a chance to catch up with old friends and meet new ones. Get ready for a full day on Saturday, starting with breakfast and the chance to tune in with nature. Attend educational workshops, meet-the-expert sessions, sibling camp, and mom-and-dad support groups throughout the day. Enjoy a delicious mocktail hour and special dinner as the sun sets while making new connections and creating lasting memories.

But the magic doesn’t end there! On Sunday, seasoned parents and guardians will share their hard-won wisdom to help you take on the challenges of raising your special child. Our hope is that you will leave Camp Saginaw feeling recharged and empowered. Check out our all-inclusive pricing below and join us at Camp Saginaw for an unforgettable experience.


East Coast Regional Retreat Selection Price
Early Bird $299
Caregiver (Non-parent) $225
Individual with CdLS No Cost
Children Under Fiver No Cost
Regular Registration  $375 

Early Bird Registration opens on June 18, 2024.

Regular Registration opens for ALL on July 23, 2024.

Registration closes on August 16, 2024.

Sibling Camp

We know having a child with special needs impacts everyone in young and growing families. While siblings share many of the same concerns as their parents, they also have concerns and challenges that are uniquely theirs.

At our East Coast Regional Retreat, siblings aged 5 and above can spend a fun-filled day participating in various activities like go-karting, canoeing, kayaking, ATV riding, arts and crafts, and more. The Camp Saginaw staff will lead the activities, giving siblings the opportunity to bond with others in their age group.

Although we don’t have a daycare program for individuals with CdLS or children under the age of 5, caregivers will have the opportunity to do camp-related activities with the person they are chaperoning. All meals, lodging, and activities are included in the pricing for the caregiver. 

Experts in Attendance

Specialists include gastroenterology, genetics and genetic counseling, pediatrics, speech and language therapy (including the use of assistive and augmentative devices), psychology and psychiatry. All medical specialists are part of our Clinical Advisory Board and have expertise in CdLS.

In addition to medical experts, adults with CdLS from our community will be part of the Meet the Experts sessions, willing to share their wisdom, challenges, accomplishments, and expertise. Their life experiences are amazing to hear and can provide a window to future possibilities.

Special Groups

We have scheduled time for moms to gather, talk, and enjoy an activity together. There is a similar activity time for dads to get to know each other. There will also be time for caregivers and grandparents to meet and spend time together.

This is a time to meet and share experiences with a smaller group of moms or dads, normalizing and validating the unique experiences of a parent of an individual with CdLS.

Cabin Information

Lodging on the campsite includes a mix of individual and bunk-type cabins. All the cabins have electricity and full indoor bathrooms with showers. If you know of a family you want to share a cabin with, we encourage you to plan together and indicate those plans when both families register.

If you choose not to stay on-site, there are hotels located approximately 20-25 minutes away from Camp Saginaw.

Hotel costs are not included in the all-inclusive per-person registration rate.

Scholarship Information

We would never want a family to forego the Regional Retreat due to finances. The Foundation has limited funding to offer scholarships to families needing assistance. Requesting scholarship funds will be part of the registration process.