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DTSTART;TZID=UTC:20251002T190000
DTEND;TZID=UTC:20251002T200000
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CREATED:20250604T182641Z
LAST-MODIFIED:20250820T205201Z
UID:9346-1759431600-1759435200@www.cdlsusa.org
SUMMARY:Virtual Support Groups for Parents
DESCRIPTION:The CdLS Foundation is pleased to offer Virtual Support Groups for Parents\, providing a consistent opportunity to connect\, share\, and support one another.\n🗓 Thursday\, October 2\, 2025\n🕖 7:00 – 8:15 p.m. ET\nWe believe no parent should walk this path alone at the CdLS Foundation. As caregivers\, you are the backbone of our community\, and we see you. We understand the emotional and physical challenges that come with your role. \nThese virtual gatherings are here to help you: \n\nConnect with others who understand your journey\nShare and receive meaningful advice\nFeel heard\, supported\, and uplifted\n\nWhether you’re new to the CdLS community or have been walking this road for years\, we invite you to join us for an hour of connection\, understanding\, and encouragement. You belong here. \nSessions will be held on the first Thursday of every month and will be dedicated to connection and support. \nTo register\, click here.
URL:https://www.cdlsusa.org/event/virtual-support-groups-for-parents-4/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251007T200000
DTEND;TZID=UTC:20251007T200000
DTSTAMP:20260403T163539
CREATED:20250919T195655Z
LAST-MODIFIED:20250919T195748Z
UID:9601-1759867200-1759867200@www.cdlsusa.org
SUMMARY:Every Voice Matters: Advocating for Person-Centered Medical Care Webinar
DESCRIPTION:Caring for a loved one who needs ongoing support is never simple—and when serious medical challenges arise\, the journey can feel overwhelming. \nIn 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 offer insight into what it means to navigate healthcare with courage\, advocacy\, and compassion. \nWhat You’ll Learn\nParticipants will walk away with strategies to make healthcare more collaborative\, person-centered\, and supportive. \nKey Takeaways: \n\nPractical Advocacy Tools – Communicate effectively with healthcare teams and ask for accommodations that truly matter.\nSupporting Self-Advocacy – Empower individuals with disabilities to express choices\, preferences\, and fears during medical care.\nBuilding Comfort & Connection – Maintain routines\, reduce stress\, and honor what matters most in challenging times.\n\nAbout the Presenters\nMaurice Bellstewart lives in Newport News\, Virginia\, and is a graduate of Heritage High School and Wilson Workforce Rehabilitation Center\, earning certifications in Food Services\, Dishwasher Handling\, and Food Safety Handling. He has been featured in national publications for his innovative work as an intern with the CROP Foundation\, a nonprofit focusing on hospitality\, food sustainability\, and restaurant innovation. Maurice is a passionate self-advocate for himself and his community. \nBettie Bell\, Maurice’s mother\, has spent her life supporting his autonomy and independence. She celebrates his ability to advocate for his needs and creatively explore options for his future. Bettie is an endorsed PBS Facilitator\, a BCBA\, and a technology consultant who helps people with disabilities live their best lives with the supports they need. \nRegister Here.
URL:https://www.cdlsusa.org/event/every-voice-matters-advocating-for-person-centered-medical-care-webinar/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251009T120000
DTEND;TZID=UTC:20251009T130000
DTSTAMP:20260403T163539
CREATED:20250618T221508Z
LAST-MODIFIED:20250618T221529Z
UID:9417-1760011200-1760014800@www.cdlsusa.org
SUMMARY:Parent University: Sibling Panel – Let’s Talk About What Sibs Need to Know\, When They Need to Know It\, and Why. Let’s Hear Experiences From Siblings Themselves – The Future Without Us Peace of Mind
DESCRIPTION: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 how much of the nitty gritty do they NEED to know? \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-sibling-panel-lets-talk-about-what-sibs-need-to-know-when-they-need-to-know-it-and-why-lets-hear-experiences-from-siblings-themselves-the-fu/
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DTSTART;TZID=UTC:20251009T200000
DTEND;TZID=UTC:20251009T210000
DTSTAMP:20260403T163539
CREATED:20250902T193922Z
LAST-MODIFIED:20250902T193922Z
UID:9561-1760040000-1760043600@www.cdlsusa.org
SUMMARY:You Can Never Be Too Prepared: Pediatric Disaster and Emergency Preparedness
DESCRIPTION: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. \nThis event will provide a platform for learning and sharing best practices to create an actionable plan that prioritizes the safety and care of children in times of crisis. And include action items you can take now as the caregiver to make sure you are always prepared for the unexpected. \nThis event will take place on Thursday\, October 9th at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nRegister Here
URL:https://www.cdlsusa.org/event/you-can-never-be-too-prepared-pediatric-disaster-and-emergency-preparedness/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251011T160000
DTEND;TZID=UTC:20251011T190000
DTSTAMP:20260403T163539
CREATED:20251001T233214Z
LAST-MODIFIED:20251001T234225Z
UID:9617-1760198400-1760209200@www.cdlsusa.org
SUMMARY:7th Annual Whole Hog to Benefit CdLS Foundation
DESCRIPTION:
URL:https://www.cdlsusa.org/event/7th-annual-whole-hog-to-benefit-cdls-foundation/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251012
DTEND;VALUE=DATE:20251013
DTSTAMP:20260403T163539
CREATED:20241212T233045Z
LAST-MODIFIED:20250623T202449Z
UID:8570-1760227200-1760313599@www.cdlsusa.org
SUMMARY:2025 Bank of America Chicago Marathon
DESCRIPTION:Running for those who cannot!\nThirty 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 the CdLS community. You can support the Team\, by donating here. All donations will be posted on our Team CdLS Chicago page. \nFunds raised through Team CdLS provide resources\, research and crucial support services. Together\, we can continue reaching out\, providing help and giving hope to individuals and their families impacted by CdLS \nEvent Details\n2025 Bank of America Chicago Marathon\nRace Day: Sunday\, October 12\, 2025\nWhere: Grant Park\, Chicago \nIf you are interested in being a team sponsor\, please contact Lisa Schroeder\, Events Manager. \nAnother fun way to support the team is to sign up for Curb Crew; we would love to have you as part of the “crew” and share in the fin and excitement of marathon weekend! \nThank you on behalf of Team CdLS 💜
URL:https://www.cdlsusa.org/event/2025-bank-of-america-chicago-marathon/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251012T140000
DTEND;TZID=UTC:20251012T170000
DTSTAMP:20260403T163539
CREATED:20250814T225841Z
LAST-MODIFIED:20250821T175421Z
UID:9529-1760277600-1760288400@www.cdlsusa.org
SUMMARY:Missouri Family Gathering
DESCRIPTION:Join families from Missouri and surrounding states for a CdLS Foundation Family Gathering. \nSunday\, October 12\, 2025\n2-5 p.m. \nGraciously hosted by: Haylee and Josh\, parents to Charlee \nHercules Residence\n2283 Marilyn Drive\nWentzville\, MO 63385 \nFamily Gatherings are planned with your whole family in mind. There will be activities for everyone. You’ll have the chance to meet families in the area who share similar challenges and triumphs as parents of children with Cornelia de Lange Syndrome (CdLS). \nRegister Here! \n\n\n\nYou’re invited to the Amber Gaines Memorial Golf Classic the next day!\nNot a golfer\, not a problem\, you can volunteer\, attend lunch or dinner\, and be a part of this annual event going into its 37th year.\nClick here for more information.
URL:https://www.cdlsusa.org/event/missouri-family-gathering-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251013
DTEND;VALUE=DATE:20251014
DTSTAMP:20260403T163539
CREATED:20241212T233649Z
LAST-MODIFIED:20251121T183339Z
UID:8573-1760313600-1760399999@www.cdlsusa.org
SUMMARY:37th Annual Amber Gaines Memorial Golf Classic
DESCRIPTION: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 to continue serving nearly 4\,000 families across the United States and around the world. With your help\, we will continue to fund vital programs and services that support families\, their caregivers\, professionals and research. \nYour participation and contributions are making a tangible difference. Although the event is over\, your continued support can still have a lasting impact on our community. If you missed it this year you can still\, make a donation here. \nSave the Date: October 12th\, 2026\, for our 38th Annual Amber Gaines Memorial Golf Classic! See you there. \n  \nThis long-standing Missouri golf outing is one of the CdLS Foundation’s largest fundraisers. Last year’s MCWP & PLM’s 36th Annual Amber Gaines Memorial Golf Classic did not disappoint. 132 golfers enjoyed a day of golf\, a light breakfast\, lunch and awards dinner at the Tapawingo National Golf Club\, over $92\,000 was raised! Thank you to the amazing committee who organized the event\, the volunteers\, golfers\, donors and sponsors. With your continued support we can continue to support individuals with CdLS\, their families and those who care for them. Join us again this year on Monday\, October 13th\, registration for 2025 will begin in July. \nTapawingo National Golf ClubSunset Hills\, MO
URL:https://www.cdlsusa.org/event/37th-annual-amber-gaines-memorial-golf-classic/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/06/mo-golf3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251016T123000
DTEND;TZID=UTC:20251016T140000
DTSTAMP:20260403T163539
CREATED:20251008T200209Z
LAST-MODIFIED:20251008T200209Z
UID:9640-1760617800-1760623200@www.cdlsusa.org
SUMMARY:Knowing The Rights for your RARE Child\, (Or Yourself) Webinar
DESCRIPTION:Global Genes invites you to join us for the 8th and final session of our year-long virtual patient summit. \nKnowing The Rights for your RARE Child\, (Or Yourself) \n📅 Thursday\, October 16th | 🕑 12:30 – 2:00 p.m. ET \nUnderstanding your legal rights is critical to effectively advocate for your child and yourself. Join us for an empowering panel discussion. \nThis session will cover essential topics such as: \n\nNavigating insurance policies\nUnderstanding education laws\nAccessing healthcare services\n\nYou’ll leave with practical tools to advocate confidently\, communicate persuasively\, and lead effectively within complex systems. Together\, let’s strengthen our voices and ensure every child has access to the rights and services they deserve. \nRegister here: http://bit.ly/4mRpUmT
URL:https://www.cdlsusa.org/event/knowing-the-rights-for-your-rare-child-or-yourself-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/10/Rare-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251018
DTEND;VALUE=DATE:20251019
DTSTAMP:20260403T163539
CREATED:20250502T180320Z
LAST-MODIFIED:20251121T182925Z
UID:9215-1760745600-1760831999@www.cdlsusa.org
SUMMARY:Baltimore Running Fest
DESCRIPTION: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. \nCongratulations to the Team on your incredible accomplishment! You committed months ago\, trained through it all\, and showed up ready to run for a cause bigger than yourself. Thank you to our Curb Crew for bringing the energy\, signs\, cheers\, and love from sunrise to the finish line! And a special thank you to our Team Ambassadors Sydnie\, Peyton\, Amanda & Liam\, you remind everyone why we run.\n\nThank you for every stride and see you in 2026!If you are interested in being on Team CdLS Baltimore 2026 or be a part of our Curb Crew\, please email Lisa Schreoder\, Event Manager at lschroeder@cdlsusa.org.\nEvent details will be posted when they become available.\n\nWe are delighted to invite you to become a part of Team CdLS Baltimore for the 25th Annual Baltimore Running Festival\, taking place on Saturday\, October 18\, 2025! This exciting event promises a vibrant atmosphere filled with energy and camaraderie. As you lace up your running shoes\, you’ll not only be participating in an exhilarating day of racing but also making a significant impact in the lives of those affected by Cornelia de Lange Syndrome (CdLS). \nTogether\, we can rally to raise awareness and essential funds for the CdLS Foundation. Your involvement is crucial\, and every step you take will help illuminate the path forward for this meaningful cause. Join us in making a difference! Your participation truly matters! \nContact Lisa Schroeder for more information! \nRegister Now!
URL:https://www.cdlsusa.org/event/baltimore-running-fest/
LOCATION:Baltimore
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Baltimore-Running-Fest-2025.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251019T093000
DTEND;TZID=UTC:20251019T120000
DTSTAMP:20260403T163539
CREATED:20250918T232205Z
LAST-MODIFIED:20250918T232205Z
UID:9590-1760866200-1760875200@www.cdlsusa.org
SUMMARY:Walk for Will and Hope
DESCRIPTION:Time: Registration begins at 9:30; walk begins at 10.\n– No advance registration required.\n– 2-mile walk on Stony’s paved path at your own pace. We’ll have coffee\, donuts\, bagels and juice.\n– Even if you can’t walk\, it’s a wonderful opportunity to connect with other families impacted by CdLS. Last year\, we had 4 families with direct CdLS connections — three who have children and whose daughter had CdLS and died as an infant.\n– There is a $10 daily park entrance fee to get into the park unless you have an annual Huron-Clinton Metroparks pass.\n– Dogs are welcome but must be on a leash.\n– We walk in the rain or shine. We’ve done both!\n– This is the only event of its kind in Michigan.\n– Call/text Maureen Feighan-Kurth at 248 701-9955 with any questions. \nThe walk was started in 2009 in honor of Will Kurth and his sister\, Hope\, both affected by CdLS. Will was born in Royal Oak\, Michigan in 2004 and spent three months in the NICU before he died from respiratory issues. His sister\, Hope\, was born three years later\, in 2007\, also with CdLS. She spent two weeks in the NICU before coming home and has been full of sass and determination ever since. She turns 18 on Oct. 31. \nThe walk aims to honor not just Will and Hope\, but all people impacted by CdLS. More importantly\, it raises awareness of this rare condition\, bringing together other families impacted by the syndrome. Since it was created\, approximately 10 families with children with CdLS have walked with us\, along with their loved ones. We’ve also raised more than more than $70\,000 for the CdLS Foundation over the last 16 years. The Smith family and their daughter\, Liz\, have been important partners in organizing the walk every year. \nIf you can’t join us on Oct. 19\, we’d love your support no matter what. We’re so grateful to everyone who has played a role in raising awareness of CdLS and being a part of the walk.\nTo support the Walk for Will and Hope click here. \n  \nDate: Sunday\, Oct. 19\nLocation: Stony Creek Metropark\, 4300 Main Park Road\, Shelby Township.\nStarting from Baypoint Beach Picnic Shelter. Look for the “Will & Hope” signs.\nTime: Registration begins at 9:30; walk begins at 10.
URL:https://www.cdlsusa.org/event/walk-for-will-and-hope-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2025/09/walk-wandh.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251019T110000
DTEND;TZID=America/Chicago:20251019T140000
DTSTAMP:20260403T163539
CREATED:20250909T212640Z
LAST-MODIFIED:20250916T185409Z
UID:9569-1760871600-1760882400@www.cdlsusa.org
SUMMARY:CdLS Foundation Texas Family Gathering
DESCRIPTION:Join families from Texas and surrounding states for a CdLS Foundation Family Gathering. \nSunday\, October 19\, 2025\n11:00 a.m. – 2:00 p.m. CT \nGraciously hosted by: Tiffany\, mom to Tristan and Olivia\, and Bailey\, mom to Carson \nWindhaven Meadows Park\n5400 Windhaven Pkwy\nPlano\, TX 75093 \nFamily Gatherings are planned with your whole family in mind. There will be activities for everyone. You’ll have the chance to meet families in the area who share similar challenges and triumphs as parents of children with Cornelia de Lange Syndrome (CdLS). \nClick here to register!
URL:https://www.cdlsusa.org/event/cdls-foundation-texas-family-gathering/
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