CdLS Foundation

2026 International CdLS Remembrance Day: Continuing Your Child’s Legacy
2026-02-12 12:00 - 13:00 (America/Detroit) | MD
International and United States Gathering (English Speaking) – Continuing Your Child’s Legacy
After 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.).
Register Here for the 12 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.

Día Internacional de Conmemoración del Síndrome de Cornelia de Lange
2026-02-12 12:00 - 13:00 (America/Detroit) | MD
El 12 de febrero de 2026, nuestra comunidad CdLS de todo el mundo se reunirá para un
encuentro muy especial: el Día Internacional de Recuerdo CdLS.
Este 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.
Recordar no es solo pensar en lo que hemos perdido, sino también reconocer el amor que
permanece 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.).
https://bit.ly/4b57pcB
Este espacio contará con la participación de:
Carolina Cárdenas Vargas, MS
Carolina 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.
Ha 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.
Agradecemos 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.

Continuing the Legacy of Your Loved One
2026-02-12 18:00 - 19:00 (America/Detroit) | MD
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 (America/Detroit) | MD
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 | MD
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 (America/Detroit) | MD
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 (America/Detroit) | MD
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 (America/Detroit) | MD
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 | MD
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 (America/Detroit) | MD
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 (America/Detroit) | MD
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 | MD
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 (America/Detroit) | MD
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.

2026 Parent University Class 5 - Vacations and Respite Ideas for the Whole Family
2026-05-14 13:00 - 14:00 (America/New_York) | MD
May Parent University™ Class
Presented by Protected Tomorrows
Class Five
Vacations and Respite Ideas for the Whole Family
May 14, 2026
12:00 – 1:00 p.m. CST
In this exciting session about respite, Protected Tomorrows will cover:
• Have you ever thought t is just not possible to have a vacation?
• Or maybe just some respite? How does that fit into your life?
• Where can you find resources that match the needs of your family?
All classes begin at 12:00 p.m. CST
Please note that classes are recorded for future viewing
Register Here: https://us02web.zoom.us/webinar/register/WN_JDssRPESRa2dYntVnrYC6g#/registration

In the Room: Using Social Media: Pros and Perils of Virtual Engagement Webinar
2026-05-21 12:00 - 13:00 (America/Detroit) | MD
Hosted by Courageous Parent Network
Social media has transformed how families navigate complex medical journeys, creating unprecedented opportunities for connection, information sharing, and support. For parents of children with medical complexity and rare conditions, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that deserve careful consideration. This webinar, featuring Dr. Karen Low and a panel of parents, explores the multifaceted relationship between social media and families managing complex pediatric health conditions.
This event will take place on Thursday, May 21st at 12:00 pm ET (11:00 am CT, 10:00 am MT, 9:00 am PT).
Learning objectives:

Describe how parents of children with medical complexity and rare conditions engage with social media.
Identify potential risks of sharing information on social media.
Name potential benefits of seeking support through social media.

Please see below for continuing medical education (CME/CEU) credit information.
Accreditation
In support of improving patient care, Stanford Medicine is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Credit Designation
American Medical Association (AMA)
Stanford Medicine designates this Live Activity for a maximum of 1.00 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
American Nurses Credentialing Center (ANCC)
Stanford Medicine designates this live activity for a maximum of 1.00 ANCC contact hours.
Accreditation Council of Pharmacy Education (ACPE)
Stanford Medicine designates this knowledge-based activity for a maximum of 1.00 hours. Credit will be provided to NABP CPE Monitor within 60 days after the activity completion. Pharmacist UAN: JA0000751-0000-26-007-L99-P
ASWB Approved Continuing Education Credit (ACE) – Social Work Credit
As a Jointly Accredited Organization, Stanford Medicine is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this activity receive 1.00 general continuing education credits.
American Psychological Association (APA)
Continuing Education (CE) credits for psychologists are provided through the co-sponsorship of the American Psychological Association (APA) Office of Continuing Education in Psychology (CEP). The APA CEP Office maintains responsibility for the content of the programs.
Commission on Dietetic Registration (CDR)
Completion of this RD/DTR profession-specific or IPCE activity awards CPEUs (One IPCE credit = One CPEU).
If the activity is dietetics-related but not targeted to RDs or DTRs, CPEUs may be claimed which are commensurate with participation in contact hours (One 60 minute hour = 1CPEU)
RD’s and DTRs are to select activity type 102 in their Activity Log. Sphere and Competency selection is at the learner’s discretion.
Physical Therapy, Occupational Therapy (PT, OT)
Stanford Health Care Department of Rehabilitation is an approved provider for physical therapy and occupational therapy for courses that meet the requirements set forth by the respective California Boards. This course is approved for 1.00 hour CEU for PT and OT.
View full CME information and disclosure summary at https://stanford.cloud-cme.com/CPNMay2026
Register Here

Southwest Family Gathering- Texas
2026-05-30 | MD
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 (America/Detroit) | MD
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.

June Parent University™ Class Presented by Protected Tomorrows
2026-06-11 13:00 - 14:00 (America/New_York) | MD
June Parent University™ Class
Presented by Protected Tomorrows
Class Five
ABLE Accounts: The Basics and What to Use When
June 11, 2026
12:00 – 1:00 p.m. CST
In this exciting session about Able Accounts, Protected Tomorrows will cover:
The basics of ABLE, how ABLE differs by state, and how to stay out of trouble. What is the best way to use this funding tool?
All classes begin at 12:00 p.m. CST
Please note that classes are recorded for future viewing
Register Here:
https://protectedtomorrows.com/parent-university-registration/

Southeast Family Gathering- North Carolina
2026-06-13 11:00 - 16:00 (America/Detroit) | MD
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. Olivet 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 (America/Detroit) | MD
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.

July Parent University™ Class Presented by Protected Tomorrows
2026-07-09 13:00 - 14:00 (America/New_York) | MD
July Parent University™ Class
Presented by Protected Tomorrows
Class Seven
The Ins and Outs on the Uses of Special Needs Trusts
July 9, 2026
12:00 – 1:00 p.m. CST
In this exciting session about Special Needs Trusts, Protected Tomorrows will cover:
• What kind and when should you set up a Special Needs Trust? How much should you fund the trust with?
• How should you invest in the trust, and what will the taxes be? When do you put money in? When do you take money out?
• This is another great tool – Together, let’s learn how to use it correctly.
All classes begin at 12:00 p.m. CST
Please note that classes are recorded for future viewing
Register Here:
https://protectedtomorrows.com/parent-university-registration/

Illinois Family Gathering
2026-08-01 14:00 - 17:00 (America/New_York) | MD
Host:
Beaumont FamilyPerson with CdLS: Annie Beaumont

Date: August 1stTime: 2-5 PM

Location:
Burning Bush Community Center1313 Burning Bush Ln.Mount Prospect, IL 60056

CdLS Foundation August Virtual Support Group for Parents
2026-08-08 19:00 - 20:15 (America/Detroit) | MD
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.

August Parent University™ Class Presented by Protected Tomorrows
2026-08-13 13:00 - 14:00 (America/New_York) | MD
August Parent University™ Class
Presented by Protected Tomorrows
Class Eight
Education: Back-to-School Tips
August 13, 2026
12:00 – 1:00 p.m. CST
“School” can mean many things. In this exciting session about back-to-school tips, Protected Tomorrows will cover:
• If your child is young, what is an IEP?
• If your child is older, what can you expect to be available?
• Are there really appropriate school experiences for my child after high school?
All classes begin at 12:00 p.m. CST
Please note that classes are recorded for future viewing
Register Here:
https://protectedtomorrows.com/parent-university-registration/

Northeast Family Gathering
2026-08-29 14:00 - 18:00 (America/New_York) | MD
Hosts: Jennifer and Nicholas ArpPerson with CdLS: Jenna Arp

August 29th
2 – 6 p.m. ET

Location:The Arp Home9B Sandpiper LaneRexford, NY

Bring your swimsuit and towel to enjoy the pool!

Bring 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). Pizza, sub sandwiches, and beverages provided. Please bring a snack or dessert to share.

CdLS Foundation September Virtual Support Group for Parents
2026-09-03 19:00 - 20:15 (America/Detroit) | MD
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.

September Parent University™ Class Presented by Protected Tomorrows
2026-09-10 13:00 - 14:00 (America/New_York) | MD
September Parent University™ Class
Presented by Protected Tomorrows
Class Nine
The Many Faces of Protection
September 10, 2026
12:00 – 1:00 p.m. CST
In this exciting session, Protected Tomorrows will cover:
• How do you best protect what you’ve built for now and for the future?
• Do you have the right kind of protection? What if you don’t know what you don’t know? What are the types of protection you should consider?
• We’ll discuss insurance, as well as titling opportunities.
All classes begin at 12:00 p.m. CST
Please note that classes are recorded for future viewing
Register Here:
https://protectedtomorrows.com/parent-university-registration/
