CdLS Foundation

International CdLS Remembrance Day
2025-02-12 11:00 - 12:00 UTC
Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild, or sibling – they still belong and will forever be part of our journey.
On February 12, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them.
Please take a moment to remember everyone with CdLS who has died over the years.
Download and add the Facebook profile picture for International CdLS Remembrance Day.
For more information, contact Gabrielle Nadeau.

Being My Child's Protector, Advocate, and Decision-Maker in the NICU Webinar
2025-02-27 20:00 - 21:00
Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything can change. For some parents, this may mean navigating a new role: learning how to navigate the NICU and communicate with the medical team; figuring out what matters most to their baby and family; considering intense medical interventions, interpreting medical jargon; seeking clarity in the absence of a clear prognosis; building a trusting relationship with the baby’s medical team.
Join Dr. Monica Lemmon and several experienced NICU parents, for a discussion about strategies to build helpful parent-clinician alliance and parental confidence in decision-making for the newborn in the NICU.
This event will take place on Thursday, February 27th at 8:00 pm EST (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).
Register here

Stop and Shop Community Bag Program
2025-03-01 - 2025-03-31
For the entire month of March, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road, Simsbury, CT, $1 is donated to the CdLS Foundation. Our goal is to sell 500 bags (including virtually), equivalent to $2,000500 bags (including virtually), equivalent to $2,000 raisedraised. We are confident that with the help of our dedicated supporters, we can reach this goal.

We strongly encourage you to share this news with family and friends as well!

The Community Bags are displayed around the store and at the checkout. If you can’t make it to the Simsbury location, you can still support the foundation and purchase a virtual bag for $2.50. Just click the link below to make your donation.

Thank You for Your Continued Support!Thank You for Your Continued Support!

Click Here to Donate to the Stop & Shop Give Back

Supporting Your Family's Wishes: The Value of Advance Directives and Preparing for Complex Medical Decisions Webinar
2025-03-10 20:00 - 21:00
Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare wishes upstream of an emergent/urgent medical event, medical implications of and quality-of-life considerations related to advance directives, and currently available directives.
Presented by Fiona Sampey and Amy Vance, co-founders of Advanced Conversations.
This event will take place on Monday, March 24th 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
2025-03-12
Multi-Specialty Clinic for children with CdLS will be held on March 12, 2025, at Shriners Children’s Salt Lake City.
The CdLS Foundation and Shriners Children’s Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with multiple doctors with expertise in CdLS all in one day.

Adolescent and Adult Multidisciplinary Clinic
2025-04-12
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.
Presentations 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.
For more information on the clinic or to secure your spot, contact Mindy Graham or call 860.676.8166.

NORD (National Organization for Rare Disease ) Color Run for CdLS
2025-04-12 11:00 - 14:00
Join us for a new, fun event to raise awareness and funds for our CdLS community.
The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with the National Organization for Rare Disorders. Their mission is to raise awareness about rare diseases and advocate for equitable access to healthcare for individuals within the rare disease community. Through education, outreach, and advocacy, the organization aims to amplify the voices of those affected by rare conditions and work toward a more inclusive and supportive healthcare system.
Madi McCune, a senior and member of the Science Outreach Club (SOC), chose the CdLS Foundation because Madi did a research project through Harvard Medical School this past summer at Massachusetts General Hospital’s Center for Genomic Medicine that focused on the pathophysiology of cohesinopathies, CdLS being the most prominent. Learning about this disease encouraged her and her chapter to involve ourselves further by creating a fundraiser to support future research and the families impacted by this rare genetic disorder.
Support Madi and the Eckerd College Science Outreach Club Students and their NORD Chapter on Saturday, April 12 at 11:00 a.m. at the Eckerd College Campus GO Pavilion for the NORD Color Run for CDLS. It will be a 1.5-mile walk/run. Have some fun and raise awareness and funds for this rare disorder.
See you there!
Thank you. Together, we will continue to reach out, provide help, and give hope to the CdLS community.
Saturday, April 12, 2025
11:00 a.m.
Eckerd College Waterfront
4200 54th Ave. S
St. Petersburg, FL

Can’t make the Color Run but still want to support it? Scan the QR Code.

Hear from the Siblings: Sharing Their Journey with Medical Complexity
2025-04-23 20:00 - 21:00
Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with medical complexity shapes them.
This session will be moderated by Dr. Wendy Plante, who for over twenty years has worked with siblings of children with illness and disability and their families and has been involved with research and training to address siblings’ needs.
This event will take place on Wednesday, April 23rd at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).
Register here

Champions for CdLS Golf Tournament
2025-05-10 - 2025-09-30
We are very grateful to every one of you, our sponsors, golfers, and donors, whose participation and generosity made our recent golf tournament a heartfelt success. Thanks to your support, we raised an incredible $6,200 for 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 to our CdLS community.
Your 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. You can donate here.
Thank you for standing with us, for caring deeply about the CdLS community, and for helping us deliver hope, help, and connection.
Because of your support we will continue to reach out, provide help and give hope to our CdLS Community.
Even though the course is closed you can still support this event and the CdLS Foundation by donating here: Donate Now!
Information for 2026 will be coming soon. If you would like to host a golf tournament in your community please contact Lisa Schroeder, Events Manager at lschroeder@cdlsusa.org.
Thank you

This event was generously sponsored by:

In Full Bloom for Zuri
2025-05-10 | Chicago, IL
Meet Zuri, Our Joyful Bloom!
Zuri is a bright light in our lives, full of strength, love, and a spirit that keeps blooming no matter the season. She lives with Cornelia de Lange Syndrome (CdLS), a rare genetic condition that affects her daily life in many ways. But despite the challenges, Zuri continues to grow, shine, and inspire everyone around her. This CdLS Awareness Day, we’re honoring her journey with our event, In Full Bloom for Zuri, a celebration of hope, growth, and awareness.
Your support helps us spread the word about CdLS, fund resources for families like ours, and most importantly, show Zuri that she’s never alone. Plant a seed of support by donating, sharing, or simply wearing purple on May 10. Together, let’s help the world bloom a little brighter for Zuri.
If you cannot attend and would still like to donate, click here.

International CdLS Awareness Day
2025-05-10
International CdLS Awareness Day is observed each year to increase understanding and bring attention to Cornelia de Lange Syndrome (CdLS), an often misdiagnosed and little-known genetic condition. This special day serves as an opportunity for families, advocates, and healthcare professionals to unite in raising awareness and promoting early diagnosis, research, and support for individuals affected by CdLS. Activities include going live on social media, displaying educational flyers in public spaces, delivering presentations to civic organizations, healthcare providers, and schools, and engaging with local media through letters, articles, and interviews. Many also organize fundraising events, participate in social media campaigns, and host community gatherings to foster connections and provide resources for families. By coming together on CdLS Awareness Day, supporters help create a more informed and compassionate world for those living with this rare condition.

For more information, contact Gabrielle Nadeau.

CdLS Awareness Day 6th Annual Parade
2025-05-10 | Macomber Stadium, 964 High Street, RI, 02863, United States
Join Us for the 6th Annual CdLS Awareness Parade & Celebration! 📍 Central Falls📅 May 10, 2025🕘 11:00 a.m.
We’re proud to host our 6th annual event in honor of Samira, our beautiful sister who was born with Cornelia de Lange Syndrome (CdLS). This day is all about raising awareness for CdLS and celebrating children with special needs in our community!
What to Expect:

Parade through Central Falls
Soccer & Kickball Tournaments
Music, Games & Family Fun
Free Ice Cream for Kids!
Delicious Food (free with your purple event shirt)
Handmade Awareness T-Shirts are available for purchase to help everyone show support!

We’ve met other amazing children in the area with CdLS who attend every year, and together, we make this day one to remember. Though we’re not an official fundraiser yet, this grassroots effort is fueled by love, community, and the determination of one family to make a difference.
💡 Want to Help?We’re always open to support, advice, or partnerships to grow this event and make it even better in the years to come. Every bit of help means the world to us.
Come out, wear purple, and show your support. Let’s celebrate, raise awareness, and uplift our incredible CdLS community together! 💜
Unable to attend, but still want to support? Click here to donate.

Building a Path to Support: Navigating the Stages of Financial Planning Webinar
2025-05-15 20:00 - 21:00
This event will help families understand the numerous stages to be considered while developing a special needs master plan for their loved one experiencing a disability.
Presented by Mary McDirmid with All Needs Planning; top considerations they hear and help their clients with include:
government benefits
funding their lifetime
tax efficiency
insurance
housing
employment
trusts
ABLE
estate planning
All Needs Planning believes that their clients are very capable of doing this planning, the emotional aspect cannot be overstated as the biggest culprit in procrastinating. Understanding how math, emotion and habits intersect is their specialty.
This event will take place on Thursday, May 15th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).
Register here

Updates to Cuts to Medicaid Webinar
2025-05-23 12:00 - 13:00
Join the Arc of Illinois for an important webinar on Medicaid and its vital services.
The webinar will be held on Friday, May 23, from 12 – 1 p.m. ET.
They will discuss the proposed federal funding cuts and how families and individuals with disabilities can advocate against these changes.
Your voice matters—let’s make a difference together!
Don’t miss this opportunity to learn and engage.
Register here.

New Updates from the Social Security Administration Webinar
2025-06-03 12:00 - 13:00
You’re invited to a presentation featuring the latest updates from the Social Security Administration! Join us as we explore important new information and highlight the online services offered by Social Security.
The webinar will be held on Tuesday, June 3, at noon CT.
**Presenter:** Megan Forristall, Area 2 Public Affairs Specialist.
We look forward to seeing you there!
Register Here.

Ben and Jerry's Giveback Night with Simsbury High School Nation Honor Society
2025-06-04 16:30 - 20:30 | Ben & Jerry’s: The Shoppes at Farmington Valley, 110 Albany Turnpike, Canton, CT, 06019, United States
You scream! I scream! We all scream for ice cream!
Meet with friends, enter to win an ice cream party, and learn more about CdLS while supporting Team CdLS in the Bank of America Chicago Marathon this fall.
Colin MT Hamilton, Treasurer of the Massaco Chapter of the National Honors Society, an academic merit organization at Simsbury High School, is excited to partner with the CdLS Foundation not only to fulfill the chapter’s goals of giving back to our surrounding community but to help another organization and their altruistic pursuit of helping those in need. “We have committed ourselves throughout the years to community impact and give back. In order to be inducted into NHS, members must display qualities of Scholarship, Leadership, Character, and Service, once inducted, they are expected to continue activities that fulfill these pillars. On our own, we organize and run the local blood drive and food pantry donations, but members are just as likely to be found helping a teacher organize for their class, tutoring fellow students, cleaning up invasive species, or training service dogs!”

We hope you will come out and support the CdLS Foundation and the NHS of Simsbury High School.
Can’t attend, but still want to support? Click here!

Virtual Support Groups for Parents
2025-06-05 19:00 - 20:00
The CdLS Foundation is excited to announce the launch of our Virtual Support Groups for Parents—a new way to connect, share, and support one another.
First Session:
🗓 Thursday, June 5, 2025
🕖 7:00 – 8:00 p.m. ET
At the CdLS Foundation, we believe no parent should walk this path alone. As caregivers, you are the backbone of our community, and we see you. We understand the emotional and physical challenges that come with your role.
These virtual gatherings are here to help you:

Connect with others who understand your journey
Share and receive meaningful advice
Feel heard, supported, and uplifted

Whether 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.
Sessions will be held on the first Thursday of every month and dedicated to connection and support.

Register Here!

Rolling for Paige
2025-06-22 11:00 | Licht Park, 30100 Campbell Ave, Warren, MI, 48093
You’re invited to a roll-a-thon in honor of Paige! Bring your favorite wheels – bikes, skates, hoverboards, anything with wheels and get ready to roll! Minimum donation of $5 per person.
“Rolling for Paige” is a special fundraiser dedicated to raising awareness about Cornelia de Lange Syndrome (CdLS), a rare genetic disorder. Paige, the inspiration behind this event, was diagnosed with CdLS after undergoing open-heart surgery at just 5 months old. Over her 18 years, she has had more than 15 surgeries and continues to navigate developmental and health challenges related to the diagnosis.
Paige’s Pastries will be available for purchase. You can also purchase a t-shirt and show your support for Paige and the CdLS Foundation. All proceeds will benefit the CdLS Foundation. Your support and participation can make a difference. Come roll with us and help raise awareness for Cornelia de Lange Syndrome … Let’s Roll!
Can’t make it but want to contribute? Click here to support Rolling for Paige.

The Arc of IL Family Support Group Webinar!
2025-06-24 17:00 - 18:00
The Arc of Illinois is excited to invite you to their upcoming Family Support Group Webinar, designed especially for parents, family members, and caregivers of loved ones with intellectual and developmental disabilities.
This is more than just a webinar — it’s a chance to connect with others who truly understand your journey. Whether you’re looking for support, resources, or simply a place to be heard, this community is here for you.
Register Here!

Parent Perspectives: Insights into Medical Decision-Making
2025-06-25 12:00 - 13:00
Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child, weighing not only risks and benefits but also the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors that influenced their choices, the challenges they faced, and the lessons they learned along the way. Hear how they worked with their child’s care team and ultimately made their decisions. Don’t miss this opportunity to learn from real-life experiences and gather practical advice to support your own decision-making process.
This session will be moderated by Gabrielle Conecker, who has more than 20 years of experience in advocating for and advancing public health.
This event will take place on Wednesday, June 25th at 12:00 pm ET (11:00 am CT, 10:00 am MT, 9:00 am PT).
Register here

Virtual Support Groups for Parents
2025-07-03 19:00 - 20:00
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another.
🗓 Thursday, July 3, 2025
🕖 7:00 – 8:00 p.m. ET
We 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.
These virtual gatherings are here to help you:

Connect with others who understand your journey
Share and receive meaningful advice
Feel heard, supported, and uplifted

Whether 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.
Sessions will be held on the first Thursday of every month and will be dedicated to connection and support.

Register Here!

Parent University: What Really Needs to Happen when We Die? How is This Plan We Put in Place Administered Properly? – After We Are Gone Peace of Mind
2025-07-10 13:00 - 17:00
We will walk thru an estate and financial plan and learn how it is “activated”. Who does what, who knows where everything is, and how can we make sure the family knows what to do? It is not fun to think about, but it is certainly an important topic that we all need to make sure we understand.
Register here

CdLS Foundation-Sponsored Northeast Family Gathering
2025-07-12 14:00 - 18:00
Join families from New York and the Northeast for a CDLS Foundation-sponsored Family Gathering.
Saturday, July 12, 2025
2 – 6 p.m. ET
The Arp Home
9B Sandpiper Lane
Rexford, NY
(9B is on the white mailbox with a long driveway)
Graciously Hosted by Jennifer and Nicholas Arp, parents to Jenna.
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).
SPECIAL GUESTS: The CdLS Foundation Family Service team will be available to answer questions
Pizza, sub sandwiches, and beverages provided. Please bring a snack or dessert to share.
Questions? Email Family Service

Register here: bit.ly/negathering25

Virtual Support Groups for Parents
2025-08-07 19:00 - 20:00
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another.
🗓 Thursday, August 7, 2025
🕖 7:00 – 8:00 p.m. ET
We 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.
These virtual gatherings are here to help you:

Connect with others who understand your journey
Share and receive meaningful advice
Feel heard, supported, and uplifted

Whether 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.
Sessions will be held on the first Thursday of every month and will be dedicated to connection and support.
To register, click here.

Parent University: Can I Really Retire? What Needs to Be Considered? What If I Move to Another State? What If I Want My Child to Move, Too? – Retirement Peace of Mind
2025-08-14 12:00 - 13:00
Retirement usually is a goal, right? We might love what we do, but the goal to retire securely and find that security to do so is usually a goal of our own planning. When should we take Social Security? If we move, what has to change? Do we need to update our estate planning documents? If our child moves with us, what happens to their benefits? Is a retirement plan just about money? What are we retiring TO?
Register here

Virtual Support Groups for Parents
2025-09-04 19:00 - 20:00
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another.
🗓 Thursday, September 4, 2025
🕖 7:00 – 8:15 p.m. ET
We 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.
These virtual gatherings are here to help you:

Connect with others who understand your journey
Share and receive meaningful advice
Feel heard, supported, and uplifted

Whether 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.
Sessions will be held on the first Thursday of every month and will be dedicated to connection and support.
To register, click here.

Parent University: Protection and the Ways to Put It In Place – How Does Insurance Fit Into Our Planning – Safety Peace of Mind
2025-09-11 12:00 - 13:00
We know that insurance is a necessary part of our planning. Do we really need it if we have enough money? What if we can’t afford what we need? There are so many kinds of life insurance – between term life insurance, permanent life insurance, long-term care insurance and so many variations. Let’s have a basic class to identify the types of protection available, what to buy when, and when don’t we need it any more.
Register here

A Lifetime of Moments: Building Memories and Living your Child's Legacy Together
2025-09-22 20:00
Time together making memories as a family may feel especially precious when the child is living with a life-threatening medical condition. Making memories and sharing experiences that become part of the child’s legacy and the family’s treasure box can take many forms and can happen anytime: special occasions or a typical weekday.
There is meaning and legacy in experiences together; there is meaning and legacy in the concrete items that emerge from these experiences, such as photos, art, handprints, music.
Join researcher and Child-Life Specialist Dr. Jessica Boles and Soulumination’s McKenzie Johnson to learn about processes of making memories and building legacy that endure in your home and your heart.
This event will take place on Monday, September 22nd at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).
Register here

Virtual Support Groups for Parents
2025-10-02 19:00 - 20:00
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another.
🗓 Thursday, October 2, 2025
🕖 7:00 – 8:15 p.m. ET
We 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.
These virtual gatherings are here to help you:

Connect with others who understand your journey
Share and receive meaningful advice
Feel heard, supported, and uplifted

Whether 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.
Sessions will be held on the first Thursday of every month and will be dedicated to connection and support.
To register, click here.

Every Voice Matters: Advocating for Person-Centered Medical Care Webinar
2025-10-07 20:00
Caring for a loved one who needs ongoing support is never simple—and when serious medical challenges arise, the journey can feel overwhelming.
In this heartfelt and practical webinar, Bettie Bell shares the story of her autistic son Maurice’s stage 4 cancer diagnosis and the powerful lessons they discovered along the way. Together, Bettie and Maurice offer insight into what it means to navigate healthcare with courage, advocacy, and compassion.
What You’ll Learn
Participants will walk away with strategies to make healthcare more collaborative, person-centered, and supportive.
Key Takeaways:

Practical Advocacy Tools – Communicate effectively with healthcare teams and ask for accommodations that truly matter.
Supporting Self-Advocacy – Empower individuals with disabilities to express choices, preferences, and fears during medical care.
Building Comfort & Connection – Maintain routines, reduce stress, and honor what matters most in challenging times.

About the Presenters
Maurice Bellstewart lives in Newport News, Virginia, and is a graduate of Heritage High School and Wilson Workforce Rehabilitation Center, earning certifications in Food Services, Dishwasher Handling, and Food Safety Handling. He has been featured in national publications for his innovative work as an intern with the CROP Foundation, a nonprofit focusing on hospitality, food sustainability, and restaurant innovation. Maurice is a passionate self-advocate for himself and his community.
Bettie Bell, Maurice’s mother, has spent her life supporting his autonomy and independence. She celebrates his ability to advocate for his needs and creatively explore options for his future. Bettie is an endorsed PBS Facilitator, a BCBA, and a technology consultant who helps people with disabilities live their best lives with the supports they need.
Register Here.
