Dear Friends,

Over the past few years, the CdLS Foundation staff has collaborated with our families and board of directors to re-imagine the CdLS Foundation National Family Conference. Our previous National Conference model was no longer sustainable because many families found the cost of travel, hotel, and Conference prohibitive and because the CdLS Foundation historically assumed an overwhelming portion of the Conference’s expense.

Our goal was to design a new way for families to convene that provides fellowship with other families, social activities for young siblings of individuals with CdLS, and allows families to obtain accurate information and guidance from our experts. In addition, it is important to offer the opportunity to attend an in-person event to families for whom the Conference has not been financially feasible.

Guided by your input, we’re excited to announce we’ve hit on something that will work!

Beginning in 2024, the CdLS National Family Conference will become a series of Regional Retreats. The regions will be the East Coast, West Coast, and Central US. We will kick these off in 2024 on the East Coast. Our first Regional Retreat will be September 13-15, 2024, at beautiful Camp Saginaw in Oxford, PA.

Where is It?

The Camp is just over an hour away from Baltimore and less than 1.5 hours from Philadelphia.

The Camp’s beautiful landscape is perfect for learning, sharing, and relaxing. As the only group on site for the weekend, families will enjoy the fantastic activities and landscapes Camp Saginaw offers. The Camp features modern facilities for workshops, socializing, and lodging.

What Will We Be Doing?

Opening night (Friday) will include a welcome dinner for first-time families followed by s’mores and conversation around any number of the Camp’s huge firepits. Families can meet and connect in a relaxed setting. Saturday will be a full day, including presentations, an active day of sibling camp, and multiple opportunities for parents and caregivers to Meet the Experts.

Meet the Expert sessions are blocks of time throughout the day when clinical experts will be available for families to ask questions, share information, and seek guidance in an informal, small group setting. Unlike previous events, these are not private 1:1 sessions but drop-in conversations, allowing families to meet with experts throughout the day.

After a full day of programming, we will have a mocktail hour and a special dinner. Saturday evening also includes time for families to continue to bond after dinner. We will close out the event on Sunday with a presentation by veteran parents and guardians willing to share their wisdom and answer questions. We will say our goodbyes on Sunday.

Siblings of individuals with CdLS ages 5+ will have an active full day of camp activities led by Camp Saginaw staff. They will have a blast with activities like go-karts, canoeing, kayaking, riding ATVs, arts and crafts, and more!

Although we will not offer daycare for individuals with CdLS, individual caregivers can enjoy the Camp’s facilities with the child or adult with CdLS they are chaperoning.

Families will have ample time to take advantage of the Camp’s facilities. In addition to more active options, there are miles of walking trails and multiple large firepits to enjoy well into the evening (more s’mores, please!).

Where Are We Staying?

Lodging at the campsite includes a mix of individual and bunk-type cabins. All lodging options at the Camp have electricity and full indoor bathrooms (showers). Linens are available, or if you prefer, you can bring your own.

For any family that chooses not to stay at Camp Saginaw, we are working to arrange a group rate with local hotels approximately 25 minutes from Camp.

What Is the Cost?

We want to make the Regional Retreat as affordable as possible. We are reviewing costs and our resources to determine an all-inclusive per-person rate that will include programming, sibling camp, all meals, and lodging, which we hope all families interested in attending will find manageable. Individuals with CdLS will attend for free. Families staying off-site are responsible for hotel costs.

When Can I Register?

Registration will open in mid-summer to families on the East Coast.

Registration will then open to the rest of our community in late summer.

When Will We Have More Details?

We are so pleased that the focus groups we have engaged have been so enthusiastic about this new model. We hope you are as excited as we are for this wonderful event. Thank you to all those who shared their knowledge and expertise to help shape this event.

Be on the lookout for more information in your inbox and social media over the next few months!!

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