Lights of Love for our CdLS Angels
2022-02-12
February 12th is CdLS Remembrance Day, we ask everyone, everywhere, to light a candle in remembrance of each and every one of our loved ones who are no longer with us.
Sadly, more of individuals with CdLS have gained their wings in the past year, and we want to use this worldwide event to recognize and honor them.

Rare Disease Day
2022-02-28, 2023-02-28
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
For more information, contact Gabrielle Nadeau.

Protected Tomorrows, Parent University: Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them
2022-03-19 12:00 UTC
In this class, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as parents want confidence that our plan will work as Future Caregivers who will take on this very important role. The hard questions will be addressed. We will get the advice from those who have stepped into the role to give us their input as well.

Protected Tomorrows, Parent University: – Finance, Taxes, & Special Needs – Making It All Work in The End
2022-03-24 13:00 (America/New_York)
We understand that often we as parents put our children first. It’s natural. But we need to make sure we are financially secure as well, because without us, our children just might not be ok. We will talk about how your financial planning needs to be different, how to coordinate the Special Needs Trust and the ABLE Account into it, and how you integrate tax planning into your overall plan. There are so many taxes to consider, including income taxes, estate taxes and more. Questions such as, “If I am charging my child rent, do I claim it on my taxes?” will be answered. And we will talk about how the SECURE ACT might change how I distribute my retirement accounts to my children.

Multidisciplinary Clinic for Adolescents and Adults
2022-04-02
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 Pathology. Live Q&A with CdLS Clinical Advisory Board Members.
For more information on the clinic or to secure your spot, contact Deirdre Summa or call 860.676.8166.

Protected Tomorrows, Parent University: – Benefits: What You Need to Know & Get Clarity about the Often-Asked Questions
2022-04-21 12:00 UTC
We will discuss SSI, SSDI, DAC, Medicare, and Medicaid. We will talk about confusing topics like A.) Charging your child rent versus using the fair share formula. B.) Why do I hear you always get turned down the first time you apply for SSI? Is it true? C.) Do we really need to plan differently as to how we as parents plan to take our own Social Security?

National CdLS Awareness Day
2022-05-14
CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much more.
For more information contact Gabrielle Nadeau

Protected Tomorrows, Parent University - Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them
2022-05-19 12:00 (America/New_York)

2022 New England Golf Classic
2022-05-23 | Ipswich Country Club, 148 Country Club Way, Ipswich, MA, 01938, United States
Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 29th Annual New England Golf Classic to be held on Monday, MAY 23, 2022! That’s right this popular event has been moved back to it’s original season and will be played in Spring. So be sure to make this your first golf outing of the year, and be ready for a great day of golf and camraderie!
Learn more

2nd Annual Hit the Trails in Avon, CT
2022-06-11
Find out how to start your peer-to-peer fundraising and join CdLS Foundation families, staff and volunteers as we walk, run or bike an easy stint along one of the scenic Rail Trails in New England on the Farmington Valley Greenway Trail. Events@cdlsusa.org

Protected Tomorrows, Parent University – How to Make Life Better: Vacations Tips & Service Dogs
2022-06-16 12:00 (America/New_York)
In this class, we will talk about taking vacations with your special needs child. How to plan better. Ideas so the whole family can have fun! How do we plan to make sure this continues by adding the recreation into our planning? And what about Service Dogs; Can they bring happiness and comfort to your child’s life?

Protected Tomorrows, Parent University – Your Dream Team… Who Needs To Be There When You Can Not
2022-07-21 12:00 (America/New_York)
We will discuss what your Child’s Dream Team should consist of, such as your legal team, your financial team, medical support, recreation coordinators and the Coaches (the caregivers and guardians), How do you put a PLAYBOOK together with all the instructions your Team needs? What questions should you be asking your Dream Team now? How do you know if they are the right people for the Team? Tips and Ideas will be discussed. How will you keep them informed going forward?

Protected Tomorrows, Parent University – What are the Alternatives Best Suited for Your Child’s Success After They Leave Transition Programs?
2022-08-11 12:00 (America/New_York)
Why is transitioning each child so different? In this class, we will discuss what happens when the bus stops coming. We will talk about day programming, special recreation services, job counseling, job coaching, and turning your child’s interest into a business opportunity.

Protected Tomorrows, Parent University – What Are the Options, What Is the Best Fit, & How to Fund Them
2022-09-22 12:00 UTC
In this class, we will explain in detail, current residential options: living with your parents, Section 8 housing, CILAS, group/supportive housing, skilled nursing facilities, and Special Needs Trust ownerships/paying rent. We will talk about determining the best fit for your child and how to fund the different options.

2022 Bank of America Chicago Marathon
2022-10-09 | Chicago, IL
Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon Sunday, October 9, 2022, AND Agree to collect a minimum of no less than $1,250 (USD) if the entry is claimed during the application window (Tuesday, October 19, 2021 to Tuesday, November 30, 2021 at 2 pm) and $1,750 (USD) if the entry is claimed following the application window (after 2pm Tuesday, November 30, 2021 to Wednesday, September 14, 2022).
The CdLS Foundation will be there with you every step of the way, providing you with:
• Guaranteed race entry
• Complimentary entry to the Balbo Hospitality Tent
• An official Team CdLS singlet
• Pre-Race & Post-Race Dinner
• Team CdLS Swag Bag
• Weekly training guides sent via email
• Fundraising tools including your own personalized web page
• Supportive teammates who may turn into life long friends
• The satisfaction of knowing you’re helping individuals nationwide, who have CdLS
Join us and you will run away from the race with new friends, a sense of accomplishment and the satisfaction of making a difference.
Contact: specialevents@CdLSusa.org or call 800.753.2357
Help support the team, Donate Now.

Amber Gaines Memorial Golf Classic
2022-10-10
2022 Amber Gaines Memorial Golf Classic – Monday, October 10 This long standing Missouri golf outing is one of the CdLS Foundation’s largest fundraisers. MCWP & PLM’s 33rd Annual Amber Gaines Memorial Golf Classic is slated for Monday, October 10th at the Tapawingo National Golf Club. Participants will enjoy 18 holes of golf, brunch, dinner, and an opportunity to win both skill and door prizes.

2022 Baltimore Running Festival
2022-10-15
Join Team CdLS runners at the Baltimore Running Festival on Saturday, October 15, 2022. Here is a chance to run through the scenic Inner Harbor waterfront area, historic Federal Hill and charming Fells Point; all to raise money for children and adults with Cornelia de Lange Syndrome (CdLS).
Not sure you can handle the full 26.2 mile marathon? That’s okay! There are different distances for a variety of skill levels. Walk the 5K, jog the 10k, stroll the half marathon or go for gold and take on the full marathon. The options are up to you!
Help support the team Donate Now

Protected Tomorrows, Parent University – Spooky Scenarios
2022-10-20 12:00 (America/New_York)
What do we hear that scares families the most. We will be tracking the toughest questions from all classes, as well surveys done during the year. Come prepared with your questions. We are going to tackle the tough ones!

New England Family Gathering
2022-10-22 12:00 - 16:00 UTC
Everyone is welcome! Come and enjoy an afternoon of connecting, learning and fun for the whole family! Enjoy pony rides by Pony Town Parties, pumpkin decorating, and outdoor games. Fragile Footprints, a local family support organization, will host fun activities and games for siblings during the event.

To learn more about this event and how to RSVP contact Deirdre Summa.

Multidisciplinary Clinic for Adolescents and Adults
2022-10-29
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 Pathology. Live Q&A with CdLS Clinical Advisory Board Members.
For more information on the clinic or to secure your spot, contact Whitney Rinaldi or call 860.676.8166.

2022 TCS NYC Marathon
2022-11-06

Protected Tomorrows, Parent University – Year End Wrap Up & Q&A
2022-11-17 12:00 (America/New_York)
Congratulations! We have worked all year to take the next steps. But it is easy to get caught in THE GAP. Sometimes when we are working toward a big goal, we only see all that is still in front of us. Let’s turn around and review the whole year and see how far you have come in your planning and let’s close THE GAP. You will then see the real progress you have made for your family’s future. Then you can be energized as you develop new goals for 2023.

A Day of Remembrance
2023-02-12
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.
For more information, contact Gabrielle Nadeau.

Parent University: Special Needs Trust: The Who's, The What's, and The Why's Webinar
2023-02-23 13:00 - 14:00 UTC
Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees, what are the important questions you should be asking, and why should you even consider setting up a trust for your family member. What kind of trust is right for your situation? How do you pick the right attorney?
Register Here

Rare Disease Day: Learn about the CdLS Health Care Notebook Webinar
2023-02-28 13:00 - 14:00 UTC
There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one’s care can seem so disjointed. Information can be hard to get, hard to understand, and even harder to keep organized and easy to find just when you need it most. It can feel like you are constantly recreating the wheel whenever your family member has a new provider. So you are comfortable that they understand the most important things about your family member.

The CdLS Health Care Notebook provides an easy way to keep track of and share important information with your care team.

This webinar is part of two-part series. In this webinar, you will learn how to use the CdLS Health Care Notebook as an essential tool in coordinating and managing the needs of your family member with CdLS.

The second webinar will provide information on Navigating the Health Care System and how to become a stronger advocate with providers and your Health Plan. We hope you will join us for these webinars.

Register now

Multidisciplinary Clinic for children at Shriners Children's Salt Lake City
2023-03-08
We are excited to share that there will be a Multi-Specialty Clinic for children with CdLS on March 8, 2023, 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.

Due to COVID, we request no siblings and two adults present only. It is required that all persons entering our building be masked.

If you have any other questions or concerns, please contact the Family Service Coordinators at familyservicesteam@cdlsusa.org or 1.800.753.2357, press 1 for Family Service.

Dyadic Coping: Managing Caregiving Stress as a Couple
2023-03-15 20:00 - 21:00 UTC
All relationships face stress, but partners caring for a child with a serious illness are confronted with unique challenges. Each person in the relationship may cope differently. You may feel closer to, or more distance from, your partner over time. Communication with one another about how each responds to stress and grief, and what kind of support each person needs, can help increase understanding. Dr. Talia Zaider, a licensed psychologist and marriage and family therapist, will offer insights and considerations for coping together. Hear from caregivers on how they have coped alongside their partners. There will be an opportunity to ask questions and share.
This webinar will be held from 8 – 9 pm EST.
Register Now.

Grieving in Relation to Others
2023-03-21 20:00 - 21:00 UTC
Grief whether anticipatory or in bereavement is a shared experience for the family and yet each member will likely experience and process grief in different ways, over different periods of time and with varied physical and emotional manifestations. Parents often wonder or worry will I have the capacity to support my other children in their grief as I navigate my own? Or will my marriage or partner relationship change or suffer if we grieve in different ways? Others may struggle with extended family members whose response to the loss differs from their own. Friends and co-workers initially understanding and supportive in the early days often seem to lose patience as time passes. Keeping relationships healthy and strong is hard work, especially in bereavement.

This session will explore:

– The experience of grief in relation to how others receive it
– Grieving in partnership with a spouse or partner and extended family members
– Ways to understand and support the surviving siblings
– Grief and work life
– Inviting others to hold space with you

This webinar will be held from 8 – 9 pm EST.

Register Now
