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DTSTART;TZID=UTC:20251009T200000
DTEND;TZID=UTC:20251009T210000
DTSTAMP:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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:20260403T172302
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
BEGIN:VEVENT
DTSTART;TZID=UTC:20251108T110000
DTEND;TZID=UTC:20251108T150000
DTSTAMP:20260403T172302
CREATED:20250814T230209Z
LAST-MODIFIED:20250918T172948Z
UID:9530-1762599600-1762614000@www.cdlsusa.org
SUMMARY:California Family Gathering
DESCRIPTION:Join families from California for a CdLS Foundation-sponsored Family Gathering. \nSaturday\, November 8\, 2025\n11:00 a.m. – 3:00 p.m. P.T. \nGraciously hosted by: Traci\, mother to Jacob Weber \nSweet Shade Ability Center\n15 Sweet Shade\nIrvine\, CA 92606 \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 CdLS. \nCdLS Foundation staff\, Clinical Advisory Board members\, and local organization OC Music Services will be in attendance. \n\n*Disclaimer: This event is a private reservation and is not endorsed by the City of Irvine.\nRegister here!
URL:https://www.cdlsusa.org/event/california-family-gathering-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/Family-gathering-Instagram.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251110T200000
DTEND;TZID=UTC:20251110T210000
DTSTAMP:20260403T172302
CREATED:20250902T194400Z
LAST-MODIFIED:20250902T194400Z
UID:9559-1762804800-1762808400@www.cdlsusa.org
SUMMARY:Children Have Spiritual Lives\, Too. Exploring the Way Children Connect in Their World.
DESCRIPTION:Join CPN and chaplain and researcher Amanda Borchik\, MDiv\, BCC to learn about the ways children express their unique spirituality and to discuss ways that we as parents\, caregivers and clinicians can nurture their spirit. \nThis event will take place on Monday\, November 10th 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/children-have-spiritual-lives-too-exploring-the-way-children-connect-in-their-world/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/09/November-ITR-Website.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251111T180000
DTEND;TZID=UTC:20251111T190000
DTSTAMP:20260403T172302
CREATED:20250918T230419Z
LAST-MODIFIED:20250918T231308Z
UID:9588-1762884000-1762887600@www.cdlsusa.org
SUMMARY:Honoring Our Love: Navigating Grief During the Holidays Support Group
DESCRIPTION:Honoring Our Love: Navigating Grief During the Holidays\nA Supportive Gathering for Parents Who Have Lost a Child with CdLS\nThe holiday season is often described as a time of joy\, celebration\, and togetherness. But for parents who have experienced the profound loss of a child\, these months can also bring waves of grief\, longing\, and tender memories. The sparkle of the season may feel dimmed when the absence of your child is so deeply felt.\nThe CdLS Foundation\, in partnership with Courageous Parent Network\, invites you to a heartfelt webinar created just for you—a safe and compassionate space to gather\, reflect\, and honor the love you continue to carry. \nEvent Details\nDate: Tuesday\, November 11\, 2025\nTime: 6:00 p.m. ET\nLocation: Online via Zoom \nWhat to Expect\nTogether\, we will gently explore:\nWhy grief can feel especially heavy during the holidays\nWays to hold both your sorrow and your love\nMeaningful rituals to honor your child in holiday traditions\nPractical tools for navigating family\, social gatherings\, and emotional triggers\nHow leaning into grief\, rather than pushing it aside\, can nurture healing\nThis gathering will be led by Jennifer Siedman\, Director of Community Engagement at Courageous Parent Network and a bereaved parent herself. With wisdom\, compassion\, and lived experience\, Jennifer will help guide a conversation of connection\, hope\, and remembrance. \nYou Are Not Alone\nIn this season when absence is deeply felt\, community matters more than ever. By joining us\, you’ll be among parents who understand\, sharing a space where your child’s memory is honored\, your grief is validated\, and your love is seen. \nRegister Here  \nLet’s come together to honor our children\, our grief\, and our enduring love—finding comfort in each other’s presence this holiday season.
URL:https://www.cdlsusa.org/event/honoring-our-love-navigating-grief-during-the-holidays-support-group/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2025/09/Nov.-PD-Support-Group-Website.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251113T120000
DTEND;TZID=UTC:20251113T130000
DTSTAMP:20260403T172302
CREATED:20250618T221844Z
LAST-MODIFIED:20250618T221844Z
UID:9418-1763035200-1763038800@www.cdlsusa.org
SUMMARY:Parent University:  Parent Panel – Let’s Share Experiences and Learn From Each Other. Search for Peace of Mind and How is it Best Created? – The Path to Peace of Mind
DESCRIPTION:We all have differing experiences as we think about the future. The best way to learn is from others. Le’t hear some great ideas and pitfalls to avoid. Share the best things to try\, and what you might avoid. This is a HOPE session\, and you will learn IT IS possible\, but that you are probably never done. We will hear from parents who are veterans at this\, and some who might be just starting their journey. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-parent-panel-lets-share-experiences-and-learn-from-each-other-search-for-peace-of-mind-and-how-is-it-best-created-the-path-to-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:20251113T190000
DTEND;TZID=UTC:20251113T201500
DTSTAMP:20260403T172302
CREATED:20251008T193510Z
LAST-MODIFIED:20251008T193510Z
UID:9637-1763060400-1763064900@www.cdlsusa.org
SUMMARY:CdLS Foundation November Virtual  Support Group 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. The November Support Group topic will be resources. \nThursday\, November 13\, 2025\n7:00 – 8:15 p.m. ET\n📍Topic: Resources \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• Connect with others who understand your journey\n• Share and receive meaningful advice\n• Feel heard\, supported\, and uplifted. \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 focus on connection and support. \nTo register\, visit: https://bit.ly/cdlsnov25.
URL:https://www.cdlsusa.org/event/cdls-foundation-november-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/10/Nov.-Support-Group.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251119T140000
DTEND;TZID=UTC:20251119T150000
DTSTAMP:20260403T172302
CREATED:20251113T231042Z
LAST-MODIFIED:20251113T231042Z
UID:9708-1763560800-1763564400@www.cdlsusa.org
SUMMARY:Stay Covered: Open Enrollment Essentials for Rare Disease Families
DESCRIPTION:Health Insurance is changing …are you ready? Join NORD on November 19 at 2:00PM EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the care and medicines you need. \nRegister here
URL:https://www.cdlsusa.org/event/stay-covered-open-enrollment-essentials-for-rare-disease-families/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/11/NORD-webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251202
DTEND;VALUE=DATE:20251203
DTSTAMP:20260403T172302
CREATED:20250604T183411Z
LAST-MODIFIED:20250604T183411Z
UID:9347-1764633600-1764719999@www.cdlsusa.org
SUMMARY:Giving Tuesday
DESCRIPTION:Use GivingTuesday to Support the CdLS Foundation!\nMark your calendars for December 2. It is the annual celebration of GivingTuesday\, a global movement that inspires people to give\, collaborate\, and make a difference. This special day is all about turning generosity into action\, and it’s the perfect opportunity to support the CdLS Foundation. \nWhether you choose to donate\, share our mission on social media\, host a fundraiser\, or simply spread kindness\, every act of generosity counts. Your support helps raise awareness and provide critical resources for individuals with CdLS and their families and professionals caring for them. \nTogether\, we can transform compassion into real change. Join the CdLS Foundation this GivingTuesday and help us continue our mission of support\, education\, and hope. \nEveryone has something to give; what will you give on December 2?
URL:https://www.cdlsusa.org/event/giving-tuesday-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/GT-LOGO.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251204T190000
DTEND;TZID=UTC:20251204T200000
DTSTAMP:20260403T172302
CREATED:20250604T182809Z
LAST-MODIFIED:20250820T205135Z
UID:9342-1764874800-1764878400@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\, December 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 learn more\, contact the Family Service Team at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/virtual-support-groups-for-parents-6/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251211T120000
DTEND;TZID=UTC:20251211T130000
DTSTAMP:20260403T172302
CREATED:20250618T222139Z
LAST-MODIFIED:20250618T222139Z
UID:9419-1765454400-1765458000@www.cdlsusa.org
SUMMARY:Parent University: Checkpoints to Peace of Mind- The Review of Our Journey and Next Steps to Getting There
DESCRIPTION:How did we do? We will review the different peace of mind points\, evaluate our successes and failures and set some goals for next year. HOPE is important on the journey to PEACE OF MIND! Let’s recognize our successes and pat ourselves on the back for them. Let’s identify our areas to concentrate on so that we have goals for the next year. \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-checkpoints-to-peace-of-mind-the-review-of-our-journey-and-next-steps-to-getting-there/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260108T190000
DTEND;TZID=America/Detroit:20260108T201500
DTSTAMP:20260403T172302
CREATED:20251229T204824Z
LAST-MODIFIED:20251229T204824Z
UID:9833-1767898800-1767903300@www.cdlsusa.org
SUMMARY:CdLS Foundation January Virtual Support Group for Parents
DESCRIPTION:We know how much you carry every day — appointments\, school meetings\, medications\, behaviors\, and the emotional weight of loving someone with CdLS. It’s a lot\, and you don’t have to carry it alone 💙 \nEach month\, the CdLS Foundation hosts virtual support groups for parents of children and adults with CdLS. Our next CdLS Parent Support Group is coming up on January 8\, and we’d love to welcome you. \n📅 January 8\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Goal Setting \nThis confidential\, parent-only space offers time to:\n-Share what’s on your heart — or just listen\n-Learn from other parents who truly understand\n-Feel seen\, supported\, and less alone \nEven if you’re not sure you’ll feel like talking\, you are welcome just as you are. We would be honored to have you with us. \nRegister here.
URL:https://www.cdlsusa.org/event/cdls-foundation-january-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/12/Jan.-Support-Group-Social-and-Web-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260121T200000
DTEND;TZID=America/Detroit:20260121T210000
DTSTAMP:20260403T172302
CREATED:20260108T203816Z
LAST-MODIFIED:20260108T203816Z
UID:9879-1769025600-1769029200@www.cdlsusa.org
SUMMARY:In the Room: Navigating the Space Between Adjustment and Acceptance in the Context of a Genetic Diagnosis
DESCRIPTION:Hosted by Courageous Parent Network (CPN) \nReceiving a genetic diagnosis (or lacking a diagnosis) for a child can be a profoundly life-altering experience for families. In this session\, Mary-Frances will draw on her extensive experience working with parents and caregivers to explore the complex emotional responses that emerge as families learn to live with a diagnosis or uncertainty and build their “new normal.” Do families truly accept the diagnosis\, or do they adjust without full acceptance? Can both coexist? Join Mary-Frances and a panel of parents as they delve into the realities of accepting versus adjusting while navigating the challenges of their child’s medical complexity. \nThis event will take place on Wednesday\, January 21st at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nLearning objectives are: \nDifferentiate between emotional adjustment and acceptance in the context of a child’s genetic diagnosis.\nDiscuss the varied emotional responses and coping strategies parents may experience over time.\nDescribe how a genetic diagnosis can be understood as one aspect of a child’s identity\, rather than a defining characteristic.\nIdentify at least two ways that clinicians can support families in light of a genetic diagnosis. \nRegister here
URL:https://www.cdlsusa.org/event/in-the-room-navigating-the-space-between-adjustment-and-acceptance-in-the-context-of-a-genetic-diagnosis/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/January-ITR-Website-1-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260205T190000
DTEND;TZID=America/Detroit:20260205T201500
DTSTAMP:20260403T172302
CREATED:20260114T151438Z
LAST-MODIFIED:20260114T151438Z
UID:9912-1770318000-1770322500@www.cdlsusa.org
SUMMARY:CdLS Foundation February Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for February 5\, and we’d love to welcome you. \n📅 February 5\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Caregiver Burnout \nThis confidential\, parent-only space offers time to:\n-Share what’s on your heart — or just listen\n-Learn from other parents who truly understand\n-Feel seen\, supported\, and less alone \nEven if you’re not sure you’ll feel like talking\, you are welcome just as you are. We would be honored to have you with us. \nIf you have any questions\, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357. \nRegister here. \n 
URL:https://www.cdlsusa.org/event/cdls-foundation-february-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Feb.-Support-Group-Caregiver-Burnout.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260210T200000
DTEND;TZID=America/Detroit:20260210T210000
DTSTAMP:20260403T172302
CREATED:20260108T204631Z
LAST-MODIFIED:20260112T140947Z
UID:9882-1770753600-1770757200@www.cdlsusa.org
SUMMARY:In the Room: Unlocking Answers: What Every Parent Should Know About Genetic Testing
DESCRIPTION:Hosted by Courageous Parent Network (CPN) \nGenetic testing can play a powerful role in helping families find answers about their child’s health. In this session\, we’ll walk you through the different types of genetic tests\, what they can (and can’t) tell you\, and how they’re used to diagnose a wide range of conditions. We’ll also talk about how re-checking genetic data over time can lead to new insights and better outcomes. Finally\, we’ll explore how ongoing efforts are making genetic testing more available and more useful for families from all backgrounds. \nThis event will take place on Tuesday\, February 10th 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/mondaywork-management-7-88-fscognamiglio-home-my-work-ai-notetaker-235-digital-board-communication-creative-requests-private-board-to-do-list-board-website-audit-form-recently-viewed-website-audit-p/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/February-ITR-Website-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260212
DTEND;VALUE=DATE:20260213
DTSTAMP:20260403T172302
CREATED:20260108T205843Z
LAST-MODIFIED:20260113T171803Z
UID:9884-1770854400-1770940799@www.cdlsusa.org
SUMMARY:International CdLS Remembrance Day
DESCRIPTION:Losing a loved one with CdLS at any age is life-altering. Parents\, siblings\, grandparents\, relatives\, and friends experience profound grief\, often accompanied by questions that have no easy answers. During these moments\, the support of a compassionate community can make all the difference. Though their child\, sibling\, or loved one may no longer be physically with them\, these families remain an irreplaceable part of our CdLS family and our shared journey.\n\n\nOn February 12\, we will honor CdLS Remembrance Day\, a time to come together in reflection\, love\, and solidarity. We are hosting a virtual memorial event at 11:00 a.m. EST\, and we invite community members from around the world to join us as we remember\, honor\, and hold space for those we have lost.\n\n\nThe event will open with remarks from Dave Axtell\, Chairman of the CdLS World Groups and proud dad to Jade\, followed by a keynote presentation from Heather Stang\, MA\, C-IAYT\, an internationally recognized grief educator\, author\, and mindfulness practitioner.\n\n\nHeather Stang\, MA\, C-IAYT\, is an internationally recognized grief educator\, author\, and mindfulness practitioner. She is the author of Navigating Loss\, Living With Grief\, and From Grief to Peace\, and the creator of the Mindfulness and Grief System featured in The Handbook of Grief Therapies (2023). Heather hosts the Mindfulness & Grief Podcast and is the 2025 recipient of the Association for Death Education and Counseling Clinical Practice Award.\n\n Register here\n \nDownload and add the Facebook profile picture for International CdLS Remembrance Day.\n \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/international-cdls-remembrance-day-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/International-CdLS-Remembrance-Day-2026.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260403T172302
CREATED:20260122T204319Z
LAST-MODIFIED:20260122T204319Z
UID:9953-1770897600-1770901200@www.cdlsusa.org
SUMMARY:2026 International CdLS Remembrance Day: Continuing Your Child’s Legacy
DESCRIPTION:International and United States Gathering (English Speaking) – Continuing Your Child’s Legacy \nAfter the main Remembrance Day event\, international and United States families are warmly invited to stay with us for a special English-language gathering focused on connection\, reflection\, and emotional support at 12:00 p.m. (Eastern Time\, U.S.). \nRegister Here for the 12 p.m. event. \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network. \nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/2026-international-cdls-remembrance-day-continuing-your-childs-legacy/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260403T172302
CREATED:20260122T204808Z
LAST-MODIFIED:20260122T204808Z
UID:9955-1770897600-1770901200@www.cdlsusa.org
SUMMARY:Día Internacional de Conmemoración del Síndrome de Cornelia de Lange
DESCRIPTION:El 12 de febrero de 2026\, nuestra comunidad CdLS de todo el mundo se reunirá para un\nencuentro muy especial: el Día Internacional de Recuerdo CdLS.\nEste será un espacio creado con amor para honrar a nuestros hijos y seres queridos\, recordar sus vidas y acompañarnos unos a otros con compasión y cariño. \nRecordar no es solo pensar en lo que hemos perdido\, sino también reconocer el amor que\npermanece y el significado que seguimos construyendo juntos. Encuentro posterior en español – Acompañamiento y reflexión para familias. Después del evento principal\, las familias están invitadas a quedarse con nosotros para un encuentro especial en español\, enfocado en el acompañamiento\, la reflexión y la conexión\, a las 12:00 p.m. (Hora del Este\, EE. UU.). \nhttps://bit.ly/4b57pcB \nEste espacio contará con la participación de:\nCarolina Cárdenas Vargas\, MS \nCarolina Cárdenas Vargas es psicóloga\, especialista en neuropsicología y profesional en enfermedades raras\, con más de 15 años de experiencia acompañando a personas y familias. Cuenta con una Maestría en Enfermedades Raras por la Universidad de Valencia y es profesora de posgrado en neuropsicología y neurorrehabilitación.\nHa sido reconocida por la Federación Colombiana de Enfermedades Raras por su liderazgo y compromiso con la atención y el acompañamiento de familias. A través de su trabajo con la Fundación Cornelia de Lange\, ha desarrollado iniciativas de apoyo y ha ofrecido conferencias para familias que atraviesan procesos de duelo\, memoria y sanación.\nAgradecemos especialmente que hayan sido las propias comunidades de habla hispana quienes solicitaron la participación de Carolina — reflejo de la confianza y la conexión compasiva que ha construido con las familias.
URL:https://www.cdlsusa.org/event/dia-internacional-de-conmemoracion-del-sindrome-de-cornelia-de-lange/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Remembrance-Day-SPA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T180000
DTEND;TZID=America/Detroit:20260212T190000
DTSTAMP:20260403T172302
CREATED:20260122T213619Z
LAST-MODIFIED:20260122T213619Z
UID:9957-1770919200-1770922800@www.cdlsusa.org
SUMMARY:Continuing the Legacy of Your Loved One
DESCRIPTION:United States families are warmly invited to join us for an English-language gathering focused on connection\, reflection\, and emotional support at 6:00 p.m. (Eastern Time\, U.S.). \nRegister here for the 6 p.m. event \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network.\nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/continuing-the-legacy-of-your-loved-one/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/CPN-Event-600-pm.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260226T193000
DTEND;TZID=America/Detroit:20260226T203000
DTSTAMP:20260403T172302
CREATED:20260116T172812Z
LAST-MODIFIED:20260116T172812Z
UID:9919-1772134200-1772137800@www.cdlsusa.org
SUMMARY:Ask the Special Education Boss®: Live IEP Q&A with Karen Mayer Cunningham Webinar
DESCRIPTION:Hosted by Parenting Special Needs Magazine \nAsk the Special Education Boss®: Live IEP Q&A\nwith Karen Mayer Cunningham \nLIVE ONLINE EVENT \nJoin Parenting Special Needs Magazine for a free live Q&A webinar with nationally recognized special education advocate Karen Mayer Cunningham\, known as The Special Education Boss®. \nThis interactive session is designed to help parents\, caregivers\, and professionals get clear\, practical answers to real questions about: \n• IEPs\n• 504 plans\n• Evaluations\n• Navigating the special education process \nYou’ll leave with straightforward guidance and actionable next steps you can use right away. \nWHAT YOU’LL LEARN \nDo you have questions about your child’s IEP\, evaluations\, or educational rights? This live session focuses on real-world advocacy\, not theory. \nYou’ll learn how to: \n• Navigate common IEP challenges and roadblocks\n• Understand your child’s rights (FAPE\, LRE\, evaluations)\n• Respond when the school pushes back\n• Advocate effectively using proven strategies \n✔️ Bring your questions\n✔️ Get expert guidance — live\n✔️ Leave feeling more confident and prepared \nABOUT KAREN MAYER CUNNINGHAM\nKaren Mayer Cunningham—known nationally as The Special Education Boss—is a highly respected advocate\, speaker\, and trainer who has helped tens of thousands of families navigate the special education system with confidence. Her no-nonsense\, empowering approach gives parents and educators the tools they need to secure the services every child deserves. \nWANT TO GET THE MOST OUT OF THIS EVENT?\nPre-order Karen’s new book The Epic IEP™\, a powerful playbook for parents and educators navigating special education. Available at Barnes & Noble and Amazon. \nREGISTER NOW TO SAVE YOUR SEAT
URL:https://www.cdlsusa.org/event/ask-the-special-education-boss-live-iep-qa-with-karen-mayer-cunningham-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Ask-the-Special-Education-Boss-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260403T172302
CREATED:20260108T215652Z
LAST-MODIFIED:20260108T215652Z
UID:9886-1772236800-1772323199@www.cdlsusa.org
SUMMARY:Rare Disease Day
DESCRIPTION:RARE Is Not Rare \nOne out of every 10 Americans is living with a rare disease. Worldwide\, there are more than 300 million people with rare diseases. Too often\, these individuals and families are left isolated and without answers to their medical questions. It doesn’t have to be that way. \nRare Disease Day is a global initiative to raise awareness and generate support for individuals on a rare medical journey. It takes place on the last day of February\, which this year is February 28. \nThe National Organization for Rare Disorders (NORD) is the trusted voice of the more than 30 million Americans living with a rare disease. We are proud to be the official U.S. partner for Rare Disease Day. We invite you to read on to learn how to #ShowYourStripes in support of those with a rare disease. \nLearn more and visit: https://rarediseases.org/rare-disease-day/
URL:https://www.cdlsusa.org/event/rare-disease-day-4/
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END:VEVENT
END:VCALENDAR