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We are very grateful to every one of you, our sponsors, golfers, and donors, whose participation and generosity made our recent golf tournament a heartfelt success. Thanks to your support, we raised an incredible $6,200 for the CdLS Foundation. Your generosity empowers us to continue serving nearly 4,000 families across the United States and around […] |
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The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, October 2, 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 […] |
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Caring for a loved one who needs ongoing support is never simple—and when serious medical challenges arise, the journey can feel overwhelming. In this heartfelt and practical webinar, Bettie Bell shares the story of her autistic son Maurice’s stage 4 cancer diagnosis and the powerful lessons they discovered along the way. Together, Bettie and Maurice […] |
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Many of us are going to count on the siblings or other family members to step into our shoes. What jobs are they taking on? Do they feel like we have prepared them? What do they want to know yet? Have they already experienced the responsibilities? Have we as parents even talked with them, and […]
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Children have unique medical, emotional, and developmental needs during disasters, and preparing to meet those needs is essential for effective response and recovery. This is even truer for children with a serious medical condition. This event will provide a platform for learning and sharing best practices to create an actionable plan that prioritizes the safety […] |
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Running for those who cannot! Thirty athletes from all over the globe will be running the 26.2 miles thought the street of Chicago as Team CdLS participates in our 26th at The Bank of America Chicago Marathon. They will go through countless hours of physical and mental training all while raising awareness and funds for […]
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Join families from Missouri and surrounding states for a CdLS Foundation Family Gathering. Sunday, October 12, 2025 2-5 p.m. Graciously hosted by: Haylee and Josh, parents to Charlee Hercules Residence 2283 Marilyn Drive Wentzville, MO 63385 Family Gatherings are planned with your whole family in mind. There will be activities for everyone. You'll have the […] |
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Thank you to our sponsors, golfers, and donors who participated in this year MCWP & PLM’s 37th Annual Amber Gaines Memorial Golf Classic on October 13th. Your participation and generosity made this year’s event a tremendous success this year. Because of you we raised over $80,000.00 to support the CdLS Foundation. Your generosity empowers us […] |
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Global Genes invites you to join us for the 8th and final session of our year-long virtual patient summit. Knowing The Rights for your RARE Child, (Or Yourself) 📅 Thursday, October 16th | 🕑 12:30 – 2:00 p.m. ET Understanding your legal rights is critical to effectively advocate for your child and yourself. Join us for […] |
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It was an unforgettable weekend at the Baltimore Running Festival! Team CdLS Baltimore didn’t just cross finish lines; they surpassed their fundraising goal, raising over $16,700 for families affected by CdLS. Thank you to everyone who ran, cheered, and volunteered. Congratulations to the Team on your incredible accomplishment! You committed months ago, trained through it […] |
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Time: Registration begins at 9:30; walk begins at 10. - No advance registration required. - 2-mile walk on Stony's paved path at your own pace. We'll have coffee, donuts, bagels and juice. - Even if you can't walk, it's a wonderful opportunity to connect with other families impacted by CdLS. Last year, we had 4 […]
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Join families from Texas and surrounding states for a CdLS Foundation Family Gathering. Sunday, October 19, 2025 11:00 a.m. - 2:00 p.m. CT Graciously hosted by: Tiffany, mom to Tristan and Olivia, and Bailey, mom to Carson Windhaven Meadows Park 5400 Windhaven Pkwy Plano, TX 75093 Family Gatherings are planned with your whole family in […] |
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This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations […] |
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