CdLS Foundation

Missouri Charity Golf Tournament
2021-10-11
The Amber Gaines Memorial Golf Classic is scheduled for Monday, October 11th in St. Louis, MO. Registration and lunch begin at 11am with a 12:30pm shotgun start, followed by cocktails, dinner and prizes at 5:30pm.
This is the 33rd annual Foundation golf tournament in MO. It was renamed the Amber Gaines Memorial Golf Classic last year in tribute to Amber Gaines, who had CdLS, and sadly passed away last year at the age of 38. Amber was the inspiration for the tournament more than three decades ago. To register as a player, a foursome or a sponsor for the golf outing in MO, go to the Amber Gaines Golf Classic website.

2021 Bank of America Chicago Marathon
2021-10-10
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 10, 2021
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.
As a Team CdLS member, you are provided a guaranteed entry into the Bank of America Chicago Marathon with the understanding that you will meet the race’s requirements to:
• Commit to raise a minimum of $1,250 for children with CdLS
• Pay all fees associated with entering and participating in the race (registration, accommodations and transportation)
Contact: TeamCdLS@CdLSUSA.org or call 800.753.2357

2021 Baltimore Running Festival
2021-10-09
Virtual coaching, tee shirt, pre-race dinner with pizza and pasta and a view of beautiful Baltimore!

New England Charity Golf Tournament
2021-09-27
The CdLS Foundation New England Golf Classic is set for Monday, September 27, 2021, in Ipswich, MA. Registration and breakfast begin at 7:45am with a 9am shotgun start, followed by cocktails, lunch, awards and prizes at 1:30pm.
We missed this event last Spring due to the pandemic, and decided this year to move the event from May to September just to be safe. So, you haven’t missed it! To register as a player, a foursome or as a sponsor go to our new New England Golf website.

Protected Tomorrows, Parent University: Keeping “The Dream Team” Alive
2021-09-23 20:00 UTC
We will continue discussing the importance of The Dream Team and choosing the right people for the right job to ensure your child’s future success! We will talk more in-depth about how to build this team and keep moving them forward – making it easier for your future caregiver and educating your trustee. We will go to the NEXT LEVEL in your utilization of the Dream Team Plan to make it a reality.

Protected Tomorrows, Parent University: Transition Programs & Schools – What is the Right Choice?
2021-08-19 20:00 UTC
Finding the transition program that best meets the needs of your child with a disability is so important. We will discuss the different types of programs, what type of program is best for your child, what types of community-based programs are out there, what programs will benefit your child, and how can you fund the programs your child attends.

Protected Tomorrows, Parent University: Ways to Support Siblings in Special Needs Families
2021-07-15 20:00 UTC
Having a sibling with special needs is a reality many children are born into. The advantages to having a sibling with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these siblings also shoulder tremendous burdens that are not often or easily discussed. We will talk about the role siblings play in day-to-day life and how to include, educate, and support them.

Illinois Family Gathering
2021-06-27 12:00 - 15:00 UTC | Heritage Park 1 Community Blvd Wheeling, IL 60090, 1 Community Blvd, Wheeling, IL, United States
Hosted by Charyn Beaumont, Families can stay the whole time or just drop by if they would like. It will be located under the red and white striped tent at Heritage Park in Wheeling. The sign up genius created is where you can sign up to bring desserts/drinks/snacks. Deli/Sub sandwiches will be provided.

Hit the Trail for CdLS
2021-06-25 13:00 - 15:00 UTC | Farmington Valley Greenway Trail
Come and Celebrate with us! Join members of the CdLS Foundation Board of Directors and staff as we salute 40 years of supporting our families, while raising money and enjoying the beautiful and scenic Farmington Valley Greenway Rail Train in Avon, CT. You won’t want to miss this very special 40th Kick Off event on June 25th!
For more information, contact Annette Scheidecker at events@CdLSusa.org.

Protected Tomorrows, Parent University: Corporate Trustee 101: What They Are and Why They Are Important
2021-06-17 19:00 UTC
A very important component of the Future Life Care Plan is the Special Needs Trust. The careful selection of those who will make sure your goals for the Special Needs Trust implementation is key to the smooth transition and the future happiness and safety of your family member. Making sure your Successor Trustees are qualified, caring, and able to fulfill their responsibilities will provide you peace of mind for the future. We take a closer look at the best qualities for a Trustee/Trustees, a Trustee duties/job, how to identify potential trustees, recognize the responsibility – does the trustee have what it takes? and the benefits of naming a professional or corporate trustee.

California Virtual Family Gathering
2021-06-05 14:00 - 16:00 UTC
Please join us for a California Virtual Family Gathering. Hosted by the CdLS Foundation Family Service and RCs Karen Prada, Melissa Staggs, Susan Drexler and Dena Davis.
Send a photo via email if you would like your child/family in the slide show.
Saturday, June 5th, 11 a.m. – 1 p.m. PST.
This gathering will be held via Zoom.
RSVP to Alisicia Jackson at families@CdLSusa.org.

CdLS Race to Tulsa
2021-05-16
Join the Local Planning Committee for a virtual race benefiting CdLS. Cornelia de Lange Syndrome or CdLS is a rare genetic syndrome that causes a broad range of physical, cognitive, and medical challenges for the diagnosed individual. Every two years the CdLS Foundation hosts a Family Conference where individuals with CdLS and their families from around the world can attend to learn about CdLS, how to care for individuals with CdLS, seek medical advice with multiple specialists, and bond with other families similar to their own. All proceeds from this virtual race will be donated to the 2022 Family Conference located in Tulsa, OK.
This virtual race is a fun run with different race options (1K, 5K, 10K) making it a perfect activity for individuals or the whole family. Some great swag is included such as a custom medal and printable race bib. You can post your results and upload photos online to share your experience. Don’t want to walk/run, but still contribute to this great cause? Donations can be made using the donation button and are always welcomed! Grab your friends and family to race from your place to Tulsa, OK!
If you have any questions about this race, please contact the race director at cdlsconferencelpc@gmail.com.

SFN Dads Virtual Conference
2021-05-15 08:30 - 14:00 UTC
The SFN Dads Virtual Conference is for dads raising children with special needs, interested in:

– developing their fathering skills
– gathering resources for their child and family, and
– meeting and networking with like- minded dads

Some of the guest speakers will include: Mary Anne Ehlert, David Hirsch, Joe Mantegna, Wayne Messmer, and Rob Johnson.

Some agenda topics will include: Being Emotionally Present, Housing & Residential Issues, Sibling & Family Balance, Respite & Marriage, Grieving the Anticipated Life, Estate & Financial Planning, Education Beyond High School, Losing a Child, and Overcoming Denial.

Register Here

Protected Tomorrows, Parent University: Integrating Special Needs with Your Estate & Financial Plans
2021-05-13 20:00 UTC
You spend so much time and effort creating the Future Life Care Plan for your family member with special needs. Your estate and financial plans cannot be like everyone else’s. You need to have special documents, very specific language with beneficiaries, special thought processes for your own retirement planning, specific tools to use that are not always widely known by professionals, extra special people and teams that will support your family member’s future and more. We will work through a checklist of many of the unique needs you will want to include in your planning. This class will highlight the many opportunities you have to make the future look brighter.

CdLS Awareness Day
2021-05-08
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: Important Things to Know About Guardianship
2021-04-22 20:00 UTC
Guardianship is a legal process and used when a person can no longer make or communicate safe or sound decisions about his/her person and/or property. Before establishing a guardianship, you might consider other alternatives which we will discussed. What are the alternatives to guardianship? What individual rights are affected by a guardianship? What are the duties and responsibilities of guardianship? What are the benefits and downfalls to becoming my child’s guardian?

Transitioning to Adult Care
2021-04-21 14:00 - 15:00 UTC
As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team.
Join us to learn how to plan for this change and to hear from a mother and son, who will share their experiences transitioning from pediatric to adult care as a family living with Congenital Bilateral Perisylvian Syndrome (CBPS).
This webinar is intended for patients, caregivers, medical professionals, students and the general public.

Multidisciplinary Clinic for Adolescents and Adults
2021-04-10 10:00 - 17:00 UTC
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. This year the clinic will be virtual.
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 virtual clinic or to secure your spot,
contact Deirdre Summa or call 860.676.8166.

Transitioning to Adulthood: When the Dependent Child Reaches Adulthood
2021-03-31 20:00 - 21:00 UTC
Parenting is a lifelong process, and it is particularly so for parents of children diagnosed with a serious illness, where the child’s chronological age may not correspond with their developmental age. New challenges emerge as a child grows older and bigger. Pediatric providers or facilities may raise concerns about the ability to continue caring for your child. Services available for your child may change based on the chronological age without regard to the continued needs. How do you navigate? Come hear from parents who navigated their way.
Register here.

Protected Tomorrows, Parent University: Recordkeeping 101: Finances, Taxes and Special Needs Trust
2021-03-18 20:00 UTC
The key to financial success is keeping good financial records. With insurance, government benefits, investments, and taxes, this can become quite overwhelming. We will work together to identify ways for you to keep your records current, accurate, and complete.

CdLS Clinic at St. Louis Children’s Hospital
2021-03-10 09:00 - 15:30 UTC
St. Louis Children’s Hospital in St. Louis, Missouri will host their third Cornelia de Lange Syndrome clinic. The specialties in attendance will include the following: ENT, Genetics, Neurology, Orthopedics, Physical Therapy, Occupational Therapy, Nutrition and Social Work.

For more information contact Alisicia Jackson.

Rare Disease Day
2021-02-28
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.
There are so many different ways to get involved on Rare Disease Day!

Choosing Resiliency in the Face of Adversity
2021-02-22 19:00 UTC
How do we process an unexpected, life-altering event or circumstance? How do our choices and decisions have bearing on the outcome? Join CPN’s Blyth Taylor Lord and Facebook COO Sheryl Sandberg for a candid discussion of how these experiences shape us, and how to move forward with maximum healing and minimal regret.
This event is hosted by National Tay-Sachs and Allied Diseases as part of their Family Connection Webinar Series.
REGISTER for Choosing Resiliency

Protected Tomorrows, Parent University: How to Fund Now for Peace of Mind Later
2021-02-18 20:00 (Pacific/Auckland)
We will work through the vision of what you would hope to achieve for the future, the basic information you will need to gather now to be ready to take the next steps, and the details that are so important for your future plan. We will discuss information about retirement planning, the ABLE account, and tying together government benefits, insurance and investments.

Lights of Love for our CdLS Angels
2021-02-12
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.
Visit the Lights of Love Facebook page

A Day of Remembrance
2021-02-12
Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives and friends feel tremendous loss and many times have a difficult time 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 12th, 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.
We ask that our CdLS community join the Foundation in changing their Facebook frame to our CdLS Angels frame in support of the many individuals who are no longer with us.
For more information contact Gabrielle Nadeau.

Stimulus Payment and More Q&A: Get Your IL ABLE, SSI Impact and Other ABLE Questions Answered
2021-02-10 11:00 - 12:00 UTC
Special Olympics Illinois in conjunction with IL ABLE and Protected Tomorrows will be hosting a webinar for families and providers entitled, “Stimulus Payment and More Q&A: Get Your IL ABLE, SSI Impact and Other ABLE Questions Answered” on Wednesday,
February 10, 2021 from 12:00pm – 1:00pm CST.
Protected Tomorrows and IL ABLE will be guest presenters.
Please note, this webinar will be recorded. All registered participants will receive the information needed to watch the recorded video. If you are unable to attend the live webinar but would like to watch the recorded video, please make sure to register.
Register here

Protected Tomorrows, Parent University: New Year, New Resolution… Keeping Your Life Care Plan Moving Forward
2021-01-21 20:00 (Pacific/Auckland)
The key to a more secure fulfilling future is blending realism with hope. That takes knowledge, but also a willingness to learn about the many tools and techniques to help you get started. We will work together to identify the goals you want to achieve and the dangers you will want to avoid, along with building your team of professionals/caretakers to help you along the way.

Parent University: Progress Report / Goal Setting Time
2020-11-12 20:00 - 21:00 UTC
A look at how the small steps you started out with this year are adding up to real progress in planning for your family’s future and to set your goals for the next year.

Virtual Multidisciplinary Clinic For Adolescents And Adults
2020-11-07 | Harvey Institute for Human Genetics, Greater Baltimore Medical Center, 6701 N. Charles St., Suite 2326, Baltimore, MD, 21204, United States
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. This year the clinic will be virtual.
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 virtual clinic or to secure your spot,
contact Deirdre Summa or call 860.676.8166.
