CdLS Foundation

Continuing the Legacy of Your Loved One
2026-02-12 18:00 - 19:00 (America/Detroit)
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.).
Register here for the 6 p.m. event
This space will be led by: Amy Graver, Bereaved Champion at Courageous Parents Network.
Amy 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.
We hope you will join us as we honor our loved ones, support one another, and remember—together.
Questions? Email Family Service at familyservicesteam@CdLSusa.org.

Ask the Special Education Boss®: Live IEP Q&A with Karen Mayer Cunningham Webinar
2026-02-26 19:30 - 20:30
Hosted by Parenting Special Needs Magazine
Ask the Special Education Boss®: Live IEP Q&A
with Karen Mayer Cunningham
LIVE ONLINE EVENT
Join 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®.
This interactive session is designed to help parents, caregivers, and professionals get clear, practical answers to real questions about:
• IEPs
• 504 plans
• Evaluations
• Navigating the special education process
You’ll leave with straightforward guidance and actionable next steps you can use right away.
WHAT YOU’LL LEARN
Do you have questions about your child’s IEP, evaluations, or educational rights? This live session focuses on real-world advocacy, not theory.
You’ll learn how to:
• Navigate common IEP challenges and roadblocks
• Understand your child’s rights (FAPE, LRE, evaluations)
• Respond when the school pushes back
• Advocate effectively using proven strategies
✔️ Bring your questions
✔️ Get expert guidance — live
✔️ Leave feeling more confident and prepared
ABOUT KAREN MAYER CUNNINGHAM
Karen 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.
WANT TO GET THE MOST OUT OF THIS EVENT?
Pre-order Karen’s new book The Epic IEP™, a powerful playbook for parents and educators navigating special education. Available at Barnes & Noble and Amazon.
REGISTER NOW TO SAVE YOUR SEAT

Rare Disease Day
2026-02-28
RARE Is Not Rare
One 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.
Rare 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.
The 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.
Learn more and visit: https://rarediseases.org/rare-disease-day/

CdLS Foundation March Virtual Support Group for Parents
2026-03-05 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for March 5, and we’d love to welcome you.
📅March 5, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Community Integration
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here

In The Room: Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver
2026-03-05 20:00
Hosted by Courageous Parent Network (CPN)
Feelings of guilt and regret, including the anticipation of those emotions, are natural for all parents. However, they are particularly prevalent for those caring for children living with medical complexity. The stakes are high. Parents feel pressure to get it right – from making potentially life-saving medical decisions to ensuring that their child’s quality of life is as good as it can be to juggling the needs of the entire family. In this webinar, Dr. Chrissy Salley, a pediatric psychologist, will describe common sources of guilt and regret. Borrowing from Cognitive Behavioral Therapy and the science of caregiving, she will teach attendees strategies they can employ to manage feelings of guilt and regret throughout the caregiving journey.
This event will take place on Thursday, March 5th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).
Register Here

Multi-Specialty Clinic for children with CdLS at Shriners Children's Salk Lake City
2026-03-11 | Shriners Children’s Salt Lake City, 1275 E Fairfax Rd, Salt Lake City, UT, 84103, United States
The CdLS Foundation, in partnership with Shriners Children’s Salt Lake City, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on March 11, 2026, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive, coordinated medical care in one convenient location.
To attend, a child must be an existing Shriners patient or be evaluated at a Shriners Children’s facility prior to the clinic date. Assistance and additional details are available below.
This long-standing collaboration between the CdLS Foundation and Shriners Children’s creates a unique opportunity for families to meet with multiple pediatric specialists experienced in CdLS in a single day, helping streamline care and reduce the burden of multiple appointments.
Medical specialties available at the clinic include:

Genetics
Otolaryngology (ENT)
Gastroenterology
Pediatrics
Nutrition/Dietetics
Social Work
Orthopedics
Audiology
Wheelchair and Seating*
Orthotists and Prosthetists*

*Consultations may include devices such as custom shoe inserts and orthotics, braces, seating systems for medical strollers and wheelchairs, and other supports designed to improve mobility, comfort, and quality of life.
For more information about the CdLS Multi-Specialty Clinic in Salt Lake City or to reserve your spot, please contact Whitney Rinaldi, Program Director of Family Services, at 860-676-8166.

CdLS Foundation April Virtual Support Group for Parents
2026-04-02 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for April 2, and we’d love to welcome you.
📅 April 2, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Bring Your Loved One
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

International Siblings Day
2026-04-10
International Siblings Day is a special time to celebrate the unique, lifelong bond between brothers and sisters. Siblings of individuals with CdLS play an incredible role, offering love, support, advocacy, and friendship in truly unique ways.
We invite you to join us in honoring these amazing relationships by sharing photos of you and your sibling with CdLS. Be sure to tag the Foundation and use #CdLSsiblings so we can celebrate together!

Adolescent and Adult Multidisciplinary Clinic
2026-04-11 | Harvey Institute for Human Genetics, Greater Baltimore Medical Center, 6701 N. Charles St., Suite 2326, Baltimore, MD, 21204, United States
This Foundation-managed, free Cornelia de Lange Syndrome (CdLS) clinic is held twice each year at Greater Baltimore Medical Center (GBMC) in Baltimore, Maryland. Led since 2001 by Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, the clinic provides families with direct access to nationally recognized CdLS experts.
The clinic is open to individuals age 12 and older living with Cornelia de Lange Syndrome, along with their families and caregivers.
Attendees benefit from educational presentations and live Q&A sessions with members of the CdLS Clinical Advisory Board, covering key medical and developmental topics, including:

Behavioral Psychology
Child Psychiatry
Gastroenterology
Genetics
Gynecology
Neurology
Pediatric Ophthalmology
Speech and Language
Urology

This comprehensive clinic offers families an opportunity to learn, ask questions, and connect with specialists experienced in the care and management of Cornelia de Lange Syndrome.
For more information on the clinic or to secure your spot, contact Ashley Fernandez, Family Service Coordinator or call 860.676.8166.

Team CdLS Walk to Fight Rare Diseases
2026-04-25 10:00 - 17:00
Join us at this year’s Denise D’Ascenzo Foundations annual Walk to Fight Rare Diseases. The event will take place at Quinnipiac University, Burt Khan Gym at 10AM. There is plenty of free parking, pizza truck for all participants, magic show, children’ activities, musical entertainment, and much more. Join the team, have some fun, meet other CdLS families all while raising awareness and funds for your CdLS Foundation. You can’t be there in person to walk you can register virtually as well. Any questions please contact Lisa Schroeder, Events Manager at lschroeder@cdlsusa.org

Register at The Denise D’Ascenzo Walk to Fight Rare Diseases
(registration instructions)

The Denise D’Ascenzo Foundation’s Walk to Fight Rare Diseases — JB Sports
4/25/2026 | 10:00 a.m. ET | Quinnipiac University, Burt Khan Gym 275 Mt. Carmel Ave Hamden, CT US 06518

CdLS Foundation May Virtual Support Group for Parents
2026-05-07 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for May 7, and we’d love to welcome you.
📅 May 7, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Future Planning
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

2026 International CdLS Awareness Day
2026-05-09
International CdLS Awareness Day is an opportunity for our community and the world to come together to raise awareness about CdLS, a rare and often misunderstood genetic spectrum disorder. This meaningful day is about more than awareness; it’s about connection, education, and hope.
Families, advocates, healthcare professionals, and supporters unite to share stories, spread knowledge, and amplify the voices of individuals living with CdLS. From going live on social media and sharing educational flyers to presenting at schools, civic groups, and medical offices, every action helps build understanding and awareness. Many community members also reach out to local media, host gatherings, launch social media campaigns, and organize fundraisers to support research and family services.
Together, we can help promote earlier diagnosis, better resources, and a more compassionate world for individuals with CdLS and their families. Every share, every conversation, and every act of advocacy makes a difference.
For more information, contact Gabrielle Nadeau.

Midwest Family Gathering- Missouri
2026-05-09 11:00 - 15:00
Join families from Missouri and surrounding states for a CdLS Foundation-sponsored Family Gathering.
Graciously hosted by the Sprehe Family, parents of Izaak.
Saturday, May 9, 2026
11 a.m. – 3 p.m. CT
Millennium Park
2 Barnes W Drive
Creve Coeur, MO 63141
Celebrate International CdLS Awareness Day with us! Bring the whole family and join us! 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).

SPECIAL GUESTS: CdLS Foundation staff will be in attendance
LUNCH WILL BE PROVIDED. Pizza will be provided, and families are asked to bring a side dish, snack, beverage, or dessert to share.

Register Here.

Southwest Family Gathering- Texas
2026-05-30
Join families from Texas for a CdLS Foundation-sponsored Family Gathering.
Graciously hosted by the Hendricks and Woods/Jacob families.
Saturday, May 30, 2026
10:30 a.m. – 1:30 p.m. C.T.
Victory Forest Community Center
3427 Hemphill Street
Fort Worth, TX 76110
Family Gatherings are planned with your whole family in mind.
CdLS Foundation staff and Clinical Advisory Board members will be in attendance.
LUNCH WILL BE PROVIDED. Families are asked to bring a side dish, snack, dessert, or beverage to share.
Room Block Information:
The Omni Fort Worth
1300 Houston Street
Fort Worth, TX 76102
Book Your Hotel Room Here.
Room Block Closes: Friday, May 8, 2026.
Register Here.

CdLS Foundation June Virtual Support Group for Parents
2026-06-04 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for June 4, and we’d love to welcome you.
📅 June 4, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Behavior
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

Southeast Family Gathering- North Carolina
2026-06-13 11:00 - 16:00
Join families from North Carolina and surrounding states for a CdLS Foundation-sponsored Family Gathering.
Graciously hosted by the Radionov Family, parents of Kaleb.
June 13, 202611 a.m. – 4 p.m. ET
Mt. Olive UMC1082 Community RoadLexington, NC 27295
*A Hoyer lift and adult changing table available at the venue.*
Bring the whole family and join us! 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).
CdLS Foundation staff and Clinical Advisory Board members will be in attendance.
LUNCH WILL BE PROVIDED. Families are asked to bring a side dish, snack, or beverage to share.
Register Here.

CdLS Foundation July Virtual Support Group for Parents
2026-07-02 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for July 2, and we’d love to welcome you.
📅 July 2, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Healthy Living
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

CdLS Foundation August Virtual Support Group for Parents
2026-08-08 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for August 8, and we’d love to welcome you.
📅August 8, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Bring Your Loved One
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

Multi-Specialty Clinic for children with CdLS at Shriners Children's Salt Lake City
2026-08-13 | Shriners Children’s Salt Lake City, 1275 E Fairfax Rd, Salt Lake City, UT, 84103, United States
The CdLS Foundation, in partnership with Shriners Children’s Salt Lake City, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on August 13, 2026, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive, coordinated medical care in one convenient location.
To attend, a child must be an existing Shriners patient or be evaluated at a Shriners Children’s facility prior to the clinic date. Assistance and additional details are available below.
This long-standing collaboration between the CdLS Foundation and Shriners Children’s creates a unique opportunity for families to meet with multiple pediatric specialists experienced in CdLS in a single day, helping streamline care and reduce the burden of multiple appointments.
Medical specialties available at the clinic include:

Genetics
Otolaryngology (ENT)
Gastroenterology
Pediatrics
Nutrition/Dietetics
Social Work
Orthopedics
Audiology
Wheelchair and Seating*
Orthotists and Prosthetists*

*Consultations may include devices such as custom shoe inserts and orthotics, braces, seating systems for medical strollers and wheelchairs, and other supports designed to improve mobility, comfort, and quality of life.
For more information about the CdLS Multi-Specialty Clinic in Salt Lake City or to reserve your spot, please contact Whitney Rinaldi, Program Director of Family Services, at 860-676-8166.

CdLS Foundation September Virtual Support Group for Parents
2026-09-03 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for September 3, and we’d love to welcome you.
📅 September 3, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Eligibility Supports
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

Northwest Region Family Gathering- Northern California
2026-09-19
Join families from California and surrounding states for a CdLS Foundation-sponsored Family Gathering.
Graciously hosted by the Stagg family, Parents to AJ
Saturday, September 19, 2026
Times to be determined
Location to be determined.
Sebastopol, CA
Bring the whole family and join us! 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).
SPECIAL GUESTS: CdLS Foundation staff and Clinical Advisory Board member will be in attendance.
LUNCH WILL BE PROVIDED. Families are asked to bring a side dish, snack, dessert, or beverage to share.
Register Here

CdLS Foundation October Virtual Support Group for Parents
2026-10-01 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for October 1, and we’d love to welcome you.
📅 October 1, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

2026 Bank of America Chicago Marathon
2026-10-11
Cheer on and support our amazing team of 33 athletes from all over the country and Mexico when Team CdLS participates in their 27th year at the Bank of America Chicago Marathon. This talented and diverse group of athletes will meet on October 11th and run 26.2 miles for those who cannot all while raising awareness and funds to support the CdLS Foundation.
You can see our amazing team, read their inspiring stories and support them by clicking the team link below.
https://givebutter.com/teamcdlschi26
We do still have spots on our illustrations Curb Crew. They cheer on and support our team at crucial mile markers along the race route. If you are interested in joining our Curb Crew this year please reach out to Lisa Schroeder, Event Manager at lschroeder@cdlsusa.org for more information.
On behalf of Team CdLS Chicago thank you for your support.

38th Annual Amber Gaines Memorial Golf Classic
2026-10-12

Team CdLS Baltimore Running Festival 2026
2026-10-17
Its Time…..
To be a part of Team CdLS Baltimore for the 26th Annual Baltimore Running Festival, taking place on Saturday, October 17, 2026! Our Social Team registration is now open. 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). Together, we will 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! Last year’s team raised over $24,000, they could not have done that without your support! Run or walk, you can even join virtually and “run for those who cannot”.

Thank you for your continued support!
Register here.

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.

CdLS Foundation November Virtual Support Group for Parents
2026-11-05 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for November 5, and we’d love to welcome you.
📅 November 5, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here.

Adolescent and Adult Multidisciplinary Clinic
2026-11-07 | Harvey Institute for Human Genetics, Greater Baltimore Medical Center, 6701 N. Charles St., Suite 2326, Baltimore, MD, 21204, United States
This Foundation-managed, free Cornelia de Lange Syndrome (CdLS) clinic is held twice each year at Greater Baltimore Medical Center (GBMC) in Baltimore, Maryland. Led since 2001 by Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, the clinic provides families with direct access to nationally recognized CdLS experts.
The clinic is open to individuals age 12 and older living with Cornelia de Lange Syndrome, along with their families and caregivers.
Attendees benefit from educational presentations and live Q&A sessions with members of the CdLS Clinical Advisory Board, covering key medical and developmental topics, including:

Behavioral Psychology
Child Psychiatry
Gastroenterology
Genetics
Gynecology
Neurology
Pediatric Ophthalmology
Speech and Language
Urology

This comprehensive clinic offers families an opportunity to learn, ask questions, and connect with specialists experienced in the care and management of Cornelia de Lange Syndrome.
For more information on the clinic or to secure your spot, contact Mindy Graham, Family Service Coordinator or call 860.676.8166.

CdLS Foundation December Virtual Support Group for Parents
2026-12-03 19:00 - 20:15
The next CdLS Foundation Parent Support Group is scheduled for December 3, and we’d love to welcome you.
📅 December 3, 2026
🕖 7:00–8:15 p.m. ET
📍 Zoom (link provided upon registration)
💡 Topic: Bring Your Loved One
This confidential, parent-only space offers time to:
-Share what’s on your heart — or just listen
-Learn from other parents who truly understand
-Feel seen, supported, and less alone
Even 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.
If you have any questions, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357.
Register here
