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X-WR-CALDESC:Events for CdLS Foundation
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DTSTART;TZID=UTC:20250515T200000
DTEND;TZID=UTC:20250515T210000
DTSTAMP:20260403T154044
CREATED:20250131T202950Z
LAST-MODIFIED:20250131T203040Z
UID:8779-1747339200-1747342800@www.cdlsusa.org
SUMMARY:Building a Path to Support: Navigating the Stages of Financial Planning Webinar
DESCRIPTION:This event will help families understand the numerous stages to be considered while developing a special needs master plan for their loved one experiencing a disability. \nPresented by Mary McDirmid with All Needs Planning; top considerations they hear and help their clients with include: \ngovernment benefits\nfunding their lifetime\ntax efficiency\ninsurance\nhousing\nemployment\ntrusts\nABLE\nestate planning\nAll Needs Planning believes that their clients are very capable of doing this planning\, the emotional aspect cannot be overstated as the biggest culprit in procrastinating. Understanding how math\, emotion and habits intersect is their specialty. \nThis event will take place on Thursday\, May 15th 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/building-a-path-to-support-navigating-the-stages-of-financial-planning-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/01/May-ITR-Financial-Planning_Featured-Image-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250523T120000
DTEND;TZID=UTC:20250523T130000
DTSTAMP:20260403T154044
CREATED:20250521T193153Z
LAST-MODIFIED:20250521T193153Z
UID:9285-1748001600-1748005200@www.cdlsusa.org
SUMMARY:Updates to Cuts to Medicaid Webinar
DESCRIPTION:Join the Arc of Illinois for an important webinar on Medicaid and its vital services. \nThe webinar will be held on Friday\, May 23\, from 12 – 1 p.m. ET. \nThey will discuss the proposed federal funding cuts and how families and individuals with disabilities can advocate against these changes. \nYour voice matters—let’s make a difference together! \nDon’t miss this opportunity to learn and engage. \nRegister here.
URL:https://www.cdlsusa.org/event/updates-to-cuts-to-medicaid-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Medicaid-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250603T120000
DTEND;TZID=UTC:20250603T130000
DTSTAMP:20260403T154044
CREATED:20250521T195255Z
LAST-MODIFIED:20250521T195255Z
UID:9289-1748952000-1748955600@www.cdlsusa.org
SUMMARY:New Updates from the Social Security Administration Webinar
DESCRIPTION:You’re invited to a presentation featuring the latest updates from the Social Security Administration! Join us as we explore important new information and highlight the online services offered by Social Security. \nThe webinar will be held on Tuesday\, June 3\, at noon CT. \n**Presenter:** Megan Forristall\, Area 2 Public Affairs Specialist. \nWe look forward to seeing you there! \nRegister Here.
URL:https://www.cdlsusa.org/event/new-updates-from-the-social-security-administration-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/SSI-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250604T163000
DTEND;TZID=UTC:20250604T203000
DTSTAMP:20260403T154044
CREATED:20250502T171124Z
LAST-MODIFIED:20250502T171327Z
UID:9200-1749054600-1749069000@www.cdlsusa.org
SUMMARY:Ben and Jerry's Giveback Night with Simsbury High School Nation Honor Society
DESCRIPTION:You scream! I scream! We all scream for ice cream!\nMeet with friends\, enter to win an ice cream party\, and learn more about CdLS while supporting Team CdLS in the Bank of America Chicago Marathon this fall.\nColin MT Hamilton\, Treasurer of the Massaco Chapter of the National Honors Society\, an academic merit organization at Simsbury High School\, is excited to partner with the CdLS Foundation not only to fulfill the chapter’s goals of giving back to our surrounding community but to help another organization and their altruistic pursuit of helping those in need. “We have committed ourselves throughout the years to community impact and give back. In order to be inducted into NHS\, members must display qualities of Scholarship\, Leadership\, Character\, and Service\, once inducted\, they are expected to continue activities that fulfill these pillars. On our own\, we organize and run the local blood drive and food pantry donations\, but members are just as likely to be found helping a teacher organize for their class\, tutoring fellow students\, cleaning up invasive species\, or training service dogs!” \n\n\n\nWe hope you will come out and support the CdLS Foundation and the NHS of Simsbury High School. \nCan’t attend\, but still want to support? Click here! 
URL:https://www.cdlsusa.org/event/ben-and-jerrys-giveback-night-with-simsbury-high-school-nation-honor-society/
LOCATION:Ben & Jerry’s: The Shoppes at Farmington Valley\, 110 Albany Turnpike\, Canton\, CT\, 06019\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Ben-and-Jerrys.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250605T190000
DTEND;TZID=UTC:20250605T200000
DTSTAMP:20260403T154044
CREATED:20250528T185630Z
LAST-MODIFIED:20250528T185659Z
UID:9304-1749150000-1749153600@www.cdlsusa.org
SUMMARY:Virtual Support Groups for Parents
DESCRIPTION:The CdLS Foundation is excited to announce the launch of our Virtual Support Groups for Parents—a new way to connect\, share\, and support one another.\nFirst Session:\n🗓 Thursday\, June 5\, 2025\n🕖 7:00 – 8:00 p.m. ET\nAt the CdLS Foundation\, we believe no parent should walk this path alone. 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 dedicated to connection and support.\n \nRegister Here! 
URL:https://www.cdlsusa.org/event/9304/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250622T110000
DTEND;TZID=UTC:20250622T110000
DTSTAMP:20260403T154044
CREATED:20250411T212901Z
LAST-MODIFIED:20250516T203413Z
UID:9117-1750590000-1750590000@www.cdlsusa.org
SUMMARY:Rolling for Paige
DESCRIPTION:You’re invited to a roll-a-thon in honor of Paige! Bring your favorite wheels – bikes\, skates\, hoverboards\, anything with wheels and get ready to roll! Minimum donation of $5 per person. \n“Rolling for Paige” is a special fundraiser dedicated to raising awareness about Cornelia de Lange Syndrome (CdLS)\, a rare genetic disorder. Paige\, the inspiration behind this event\, was diagnosed with CdLS after undergoing open-heart surgery at just 5 months old. Over her 18 years\, she has had more than 15 surgeries and continues to navigate developmental and health challenges related to the diagnosis. \nPaige’s Pastries will be available for purchase. You can also purchase a t-shirt and show your support for Paige and the CdLS Foundation. All proceeds will benefit the CdLS Foundation. Your support and participation can make a difference. Come roll with us and help raise awareness for Cornelia de Lange Syndrome … Let’s Roll! \nCan’t make it but want to contribute? Click here to support Rolling for Paige. 
URL:https://www.cdlsusa.org/event/rolling-for-paige/
LOCATION:Licht Park\, 30100 Campbell Ave\, Warren\, MI\, 48093
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/04/Rolling-for-Paige.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250624T170000
DTEND;TZID=UTC:20250624T180000
DTSTAMP:20260403T154044
CREATED:20250521T195558Z
LAST-MODIFIED:20250610T191311Z
UID:9290-1750784400-1750788000@www.cdlsusa.org
SUMMARY:The Arc of IL Family Support Group Webinar!
DESCRIPTION:The Arc of Illinois is excited to invite you to their upcoming Family Support Group Webinar\, designed especially for parents\, family members\, and caregivers of loved ones with intellectual and developmental disabilities. \nThis is more than just a webinar — it’s a chance to connect with others who truly understand your journey. Whether you’re looking for support\, resources\, or simply a place to be heard\, this community is here for you. \nRegister Here!
URL:https://www.cdlsusa.org/event/the-arc-of-il-family-support-group-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/ARC-Family-Support-Group.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250625T120000
DTEND;TZID=UTC:20250625T130000
DTSTAMP:20260403T154044
CREATED:20250618T214040Z
LAST-MODIFIED:20250618T214040Z
UID:9412-1750852800-1750856400@www.cdlsusa.org
SUMMARY:Parent Perspectives: Insights into Medical Decision-Making
DESCRIPTION:Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child\, weighing not only risks and benefits but also the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors that influenced their choices\, the challenges they faced\, and the lessons they learned along the way. Hear how they worked with their child’s care team and ultimately made their decisions. Don’t miss this opportunity to learn from real-life experiences and gather practical advice to support your own decision-making process. \nThis session will be moderated by Gabrielle Conecker\, who has more than 20 years of experience in advocating for and advancing public health. \nThis event will take place on Wednesday\, June 25th at 12:00 pm ET (11:00 am CT\, 10:00 am MT\, 9:00 am PT). \nRegister here
URL:https://www.cdlsusa.org/event/parent-perspectives-insights-into-medical-decision-making/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/06/Parent-Perspectives-Insights-into-Medical-Decision-Making.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250703T190000
DTEND;TZID=UTC:20250703T200000
DTSTAMP:20260403T154044
CREATED:20250604T182104Z
LAST-MODIFIED:20250604T182104Z
UID:9335-1751569200-1751572800@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\, July 3\, 2025\n🕖 7:00 – 8:00 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.\n \nRegister Here! 
URL:https://www.cdlsusa.org/event/virtual-support-groups-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250710T130000
DTEND;TZID=UTC:20250710T170000
DTSTAMP:20260403T154044
CREATED:20250618T220116Z
LAST-MODIFIED:20250618T220152Z
UID:9414-1752152400-1752166800@www.cdlsusa.org
SUMMARY:Parent University: What Really Needs to Happen when We Die? How is This Plan We Put in Place Administered Properly? – After We Are Gone Peace of Mind
DESCRIPTION:We will walk thru an estate and financial plan and learn how it is “activated”. Who does what\, who knows where everything is\, and how can we make sure the family knows what to do? It is not fun to think about\, but it is certainly an important topic that we all need to make sure we understand. \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-what-really-needs-to-happen-when-we-die-how-is-this-plan-we-put-in-place-administered-properly-after-we-are-gone-peace-of-mind/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250712T140000
DTEND;TZID=UTC:20250712T180000
DTSTAMP:20260403T154044
CREATED:20250502T172247Z
LAST-MODIFIED:20250502T172343Z
UID:9204-1752328800-1752343200@www.cdlsusa.org
SUMMARY:CdLS Foundation-Sponsored Northeast Family Gathering
DESCRIPTION:Join families from New York and the Northeast for a CDLS Foundation-sponsored Family Gathering.\n Saturday\, July 12\, 2025 \n2 – 6 p.m. ET \n      The Arp Home \n9B Sandpiper Lane  \nRexford\, NY  \n(9B is on the white mailbox with a long driveway) \nGraciously Hosted by Jennifer and Nicholas Arp\, parents to Jenna. \nBring your swimsuit and towel to enjoy the pool!  \nBring the whole family and join us for a casual backyard get-together! 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). \nSPECIAL GUESTS: The CdLS Foundation Family Service team will be available to answer questions \nPizza\, sub sandwiches\, and beverages provided. Please bring a snack or dessert to share.\nQuestions? Email Family Service\n\n\n\nRegister here: bit.ly/negathering25
URL:https://www.cdlsusa.org/event/cdls-foundation-sponsored-northeast-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250807T190000
DTEND;TZID=UTC:20250807T200000
DTSTAMP:20260403T154044
CREATED:20250604T182425Z
LAST-MODIFIED:20250724T212502Z
UID:9343-1754593200-1754596800@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\, August 7\, 2025\n🕖 7:00 – 8:00 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-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250814T120000
DTEND;TZID=UTC:20250814T130000
DTSTAMP:20260403T154044
CREATED:20250618T220520Z
LAST-MODIFIED:20250618T220520Z
UID:9415-1755172800-1755176400@www.cdlsusa.org
SUMMARY:Parent University:  Can I Really Retire? What Needs to Be Considered? What If I Move to Another State? What If I Want My Child to Move\, Too? – Retirement Peace of Mind
DESCRIPTION:Retirement usually is a goal\, right? We might love what we do\, but the goal to retire securely and find that security to do so is usually a goal of our own planning. When should we take Social Security? If we move\, what has to change? Do we need to update our estate planning documents? If our child moves with us\, what happens to their benefits? Is a retirement plan just about money? What are we retiring TO? \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-can-i-really-retire-what-needs-to-be-considered-what-if-i-move-to-another-state-what-if-i-want-my-child-to-move-too-retirement-peace-of-mind/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250904T190000
DTEND;TZID=UTC:20250904T200000
DTSTAMP:20260403T154044
CREATED:20250604T182457Z
LAST-MODIFIED:20250820T205235Z
UID:9344-1757012400-1757016000@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\, September 4\, 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-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250911T120000
DTEND;TZID=UTC:20250911T130000
DTSTAMP:20260403T154044
CREATED:20250618T220851Z
LAST-MODIFIED:20250618T221025Z
UID:9416-1757592000-1757595600@www.cdlsusa.org
SUMMARY:Parent University: Protection and the Ways to Put It In Place – How Does Insurance Fit Into Our Planning – Safety Peace of Mind
DESCRIPTION:We know that insurance is a necessary part of our planning. Do we really need it if we have enough money? What if we can’t afford what we need? There are so many kinds of life insurance – between term life insurance\, permanent life insurance\, long-term care insurance and so many variations. Let’s have a basic class to identify the types of protection available\, what to buy when\, and when don’t we need it any more. \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-protection-and-the-ways-to-put-it-in-place-how-does-insurance-fit-into-our-planning-safety-peace-of-mind/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250922T200000
DTEND;TZID=UTC:20250922T200000
DTSTAMP:20260403T154044
CREATED:20250618T213435Z
LAST-MODIFIED:20250618T213435Z
UID:9410-1758571200-1758571200@www.cdlsusa.org
SUMMARY:A Lifetime of Moments: Building Memories and Living your Child's Legacy Together
DESCRIPTION:Time together making memories as a family may feel especially precious when the child is living with a life-threatening medical condition. Making memories and sharing experiences that become part of the child’s legacy and the family’s treasure box can take many forms and can happen anytime: special occasions or a typical weekday. \nThere is meaning and legacy in experiences together; there is meaning and legacy in the concrete items that emerge from these experiences\, such as photos\, art\, handprints\, music. \nJoin researcher and Child-Life Specialist Dr. Jessica Boles and Soulumination’s McKenzie Johnson to learn about processes of making memories and building legacy that endure in your home and your heart. \nThis event will take place on Monday\, September 22nd 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/a-lifetime-of-moments-building-memories-and-living-your-childs-legacy-together/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/06/A-Lifetime-of-Moments-Building-Memories-and-Living-your-Childs-Legacy-Together.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251002T190000
DTEND;TZID=UTC:20251002T200000
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251007T200000
DTEND;TZID=UTC:20251007T200000
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/09/Person-Centered-Webinar-Cover.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251009T120000
DTEND;TZID=UTC:20251009T130000
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251009T200000
DTEND;TZID=UTC:20251009T210000
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/09/October-ITR-Website.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251011T160000
DTEND;TZID=UTC:20251011T190000
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/10/whole-hog.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251012
DTEND;VALUE=DATE:20251013
DTSTAMP:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/12/large-Team-CdLS-CHI-collage.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251012T140000
DTEND;TZID=UTC:20251012T170000
DTSTAMP:20260403T154044
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:20260403T154044
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:20260403T154044
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:20260403T154044
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:20260403T154044
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:20260403T154044
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251101
DTEND;VALUE=DATE:20251102
DTSTAMP:20260403T154044
CREATED:20250528T184534Z
LAST-MODIFIED:20250528T184534Z
UID:9302-1761955200-1762041599@www.cdlsusa.org
SUMMARY:Adolescent and Adult Multidisciplinary Clinic
DESCRIPTION: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. \nPresentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology\, Child Psychiatry\, Gastroenterology\, Genetics\, Gynecology\, Neurology\, Pediatric Ophthalmology\, Speech and Language\, Urology. Live Q&A with CdLS Clinical Advisory Board Members. \nFor more information on the clinic or to secure your spot\, contact Whitney Rinaldi or call 860.676.8166.
URL:https://www.cdlsusa.org/event/adolescent-and-adult-multidisciplinary-clinic-4/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251107T083000
DTEND;TZID=UTC:20251107T170000
DTSTAMP:20260403T154044
CREATED:20251020T221618Z
LAST-MODIFIED:20251023T003541Z
UID:9659-1762504200-1762534800@www.cdlsusa.org
SUMMARY:Cornelia de Lange Syndrome Foundation 11th Scientific Symposium
DESCRIPTION:Join us for the Cornelia de Lange Syndrome Foundation’s\n11th Scientific Symposium\nToward Therapy for Chromatin Disorders: CdLS and Beyond \nFriday\, November 7\, 2025\n8:30 a.m. – 5:00 p.m. PT \nBeckman Center of the National Academies of Science & Engineering\n100 Academy Way\nIrvine\, CA 92617 \nWe will explore some of the most exciting frontiers in science—delving into CdLS and related disorders of chromatin\, transcription\, and RNA dysregulation. Our challenge\, and our shared opportunity\, is to connect these insights into biology and mechanisms with pathways that lead toward meaningful therapies. \nWe are also proud to offer AMA PRA Category 1 Credits™ for continuing medical education. \nRegister now at https://cdlssymposium.com/cdls-foundation-scientific-symposium-registration-form/ \nAttend in-person or virtually. \nWe invite you to present your latest research in CdLS and related fields during our dedicated poster sessions. Poster abstract submission instructions can be found on the registration page. \nFor a detailed schedule\, speaker bios\, and more information\, please explore our official event website: https://cdlssymposium.com/ \nWe look forward to seeing you there!
URL:https://www.cdlsusa.org/event/cornelia-de-lange-syndrome-foundation-11th-scientific-symposium/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/10/Symposium-2025.png
END:VEVENT
END:VCALENDAR