CdLS Foundation

Cornhole Tournament to benefit the CdLS Foundation
2024-03-16
Join us for a fundraiser benefiting the CdLS Foundation for Zack Homan’s
CBSL Project
Prizes, Silent Auction, Dinner, and Drinks!

Holy Ghost Hall
7960 Mill Station Rd
Sebastopol, CA 95472

Parent University: OUR TOOLBOX IS FULL!! WHAT TOOL DO I USE WHEN? IT’S SO CONFUSING!! HELP!!
2024-03-21 13:00 - 14:00 UTC
We hear from so many families about how they are confused as to how to use many tools we now have for planning for our loved one. Some of the tools we have are: 3rd Party Special Needs Trusts, 1st Party Special Needs Trusts, SSI, SSDI, DAC, ABLE accounts, and work income. What tool to use when? Who to call? What to pay for? When to pay for it? What account to use? Who needs to know this? Parents, guardians, future guardians, the person with a disability. Let’s talk about how to make it SIMPLE.
Register now

Adolescent and Adult Multidisciplinary Clinic
2024-04-13 08:30 - 15:00 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.
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.

Parent Unversity: WE ALL NEED A VACATION! IS IT POSSIBLE TO MAKE THAT HAPPEN? YES!
2024-04-18 13:00 - 14:00 UTC
Let’s meet some service providers that assist in vacation planning when you have a family member with unique needs. We’ll hear from some families who had successful and amazing experiences. Now is a great time to start researching and finding out what will work for your family.
Register now

Family Gathering - Virginia
2024-05-04 11:30 - 15:30 UTC
Hosted by Emily Munoz, mom to Damien and Paula Messer, mom to William

Saturday May 4th, 2024
11:30am – 3:30pm
Lambert’s Point Community Center
1251 W. 42nd St.
Norfolk, VA 23508

Main dish will be provided by hosts. Families are asked to bring a side dish, snacks or drinks.

Register here

Parent University: HOW TO INTRODUCE FUTURE GUARDIANS AND TRUSTEES INTO OUR FAMILY PROCESS – WHEN AND HOW?
2024-05-09 13:00 - 14:00 UTC
Family/Sibling communications. What they should know. What do they think they know and don’t know? If utilizing Corporate Guardians and Trustees, when to start to bring them into your process? How to find peace of mind about the future.
Register now

International CdLS Awareness Day
2024-05-11
International 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

Let's Talk About CdLS 5th Annual Parade
2024-05-11 11:00 - 15:00 UTC | Central Falls High School, 24 Summer Street, Central Falls, RI, United States
Join Sara, the sister of Samira, for the Let’s Talk About CdLS 5th Annual Parade.
Saturday, May 11, 2024
11:00 a.m. – 3:00 p.m.
Central Falls High School
24 Summer Street
Central Falls, RI

CdLS Awareness Day Event in Fairmont, MN
2024-05-11 13:00 - 15:00 (Asia/Karachi)
Join families in Fairmont, MN, for an International Awareness Day Event! Hosted by the Fausch family! Lunch will be served.

2024 CdLS New England Golf Classic
2024-05-20 | 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 31st Annual New England Golf Classic to be held on Monday, MAY 20, 2024! This popular event 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 camaraderie!

Parent University: FATHER’S DAY MONTH AT ITS BEST – DADS, DADS, AND MORE DADS! THE IMPORTANT ROLE OF DAD IN THE PLANNING FOR THE FUTURE
2024-06-13 13:00 - 14:00 UTC
Our guests from the Special Dads Network talk about their experiences. How can DADs help identify EMPLOYMENT opportunities for their child? How might the Special Dads Network help?
Register now

The Purple Pickle
2024-06-15 09:00 - 12:00 UTC | The Purple Pickle, 976 Brady Ave NW, Atlanta, GA, 30318, United States
Mixed Doubles Pickleball Tournament
Celebrating people with Cornelia de Lange Syndrome and disabilities.
Tournament Details
June 15 | 9 AM to 12 PM
The Painted Pickle
976 Brady Ave NW, Atlanta, GA 30318

Teams will advance through double elimination with teams playing one 15-point game per round.

Losing once moves you to a secondary bracket, maintaining a chance for redemption. Each team will be guaranteed to play twice.

Only mixed doubles teams are invited to compete.

All skill levels are invited to participate for a chance to win the Purple Paddle.
To learn more or to register, click here.

Nebraska Family Gathering
2024-07-06 11:00 - 14:00 UTC
Hosted by Michelle Reed, mother of Beth Ann and Christy Courtney Whetstone, mother of Bailey Aldersgate United Methodist Church, 8320 South Street, Lincoln NE We will be in the Sunshine Room and our lunch will be catered in by HyVee.

Bulls and Barrels Series
2024-07-13 19:00 - 20:00 UTC
Saddle up and join us ……

At Carters Arena in Chiefland, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The Carter family has been in the rodeo business for years and their hearts felt the need to give to the CdLS Foundation the best way we know how by putting on a Bulls and Barrels family fun event! We will be putting on a 5 event buckle series and a portion of all proceeds will go directly to the CdLS Foundation. The guest of honor at the rodeo will be little cowboy Gunner Carter. Gunner was born January 9, 2021, a month early. He was in NICU for 3 ½ months and he was diagnosed with CdLS, and our life was forever changed. Gunner is now 3 ½ years old and he is feed by feeding tube. Gunner does not walk but he just started to get around with his specially made wheelchair!!!! Gunner is deaf and nonverbal, but he loves to blow bubbles!!!

A little about the event and its history: Gunner’s grandfather Eugene Carter III raises bucking bulls and has traveled all over the southern states to different rodeos and bull rides for 40 plus years. Gunner’s father, Cole Carter rode bulls and still does on occasion, but he mainly fights the bulls now. There are always 2 bullfighters in the arena and if a bull rider gets hung up and needs help the other the other bullfighter will go to the rescue to help them and pray no one gets hurt! The Carter family is happy to be a part of something that will help a Foundation so close to their heart!

Entry fee: $10 for adults $5 for Students and 6 and under are free.

If you cannot attend but would like to donate to Bulls and Barrels, donate here.

Carter Arena CR345/347 Chiefland, FL

Parent University: LIFE SHOULD NOT BE ALL WORK AND NO PLAY – THE IMPORTANCE OF FRIENDS
2024-07-18 13:00 - 14:00 UTC
Let’s talk with some social programs around the country and how to learn more about them. The value of friendships, and what does that mean for you and your child. Build your own network or find one to fit into.
Register now

Community Fun Run/walk
2024-07-24 05:30 - 19:00 UTC
For a Community Event to support Team CdLS athletes Sam, Kerry, and Dannielle in the Bank of America Chicago Marathon this fall.
For more information, please contact Lisa Schroeder or call 860-899-1227.
Event Flyer

Courageous Parent Network: Grief Across the Caregiving Trajectory
2024-08-09 08:00 - 17:00 UTC
Grief is naturally a parent’s constant companion, from diagnosis – or lack thereof – onwards, including into bereavement. Psychologist Wendy Lichenthal, PhD is both a grief researcher and a clinician, with a particular expertise in the psychology of cancer for the patient and the family.

She will frame aspects of the grief experience and discuss using meaning and meaning-making to help with coping, regardless of diagnosis.

Register Here

This event will take place on November 7th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).

Parent University: TRANSPORTATION – A BIG MISSING LINK TO SUCCESS
2024-08-15 13:00 - 14:00 UTC
What are the options out there? Who will do the driving if you are not around? Are there any companies creating solutions to solve this need?
Register now

Bulls and Barrels Series
2024-08-17 19:00 - 21:00, 2024-09-28 19:00 - 21:00 UTC
Saddle up and join us ……

At Carters Arena in Chiefland, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The Carter family has been in the rodeo business for years and their hearts felt the need to give to the CdLS Foundation the best way we know how by putting on a Bulls and Barrels family fun event! We will be putting on a 5 event buckle series and a portion of all proceeds will go directly to the CdLS Foundation. The guest of honor at the rodeo will be little cowboy Gunner Carter. Gunner was born January 9, 2021, a month early. He was in NICU for 3 ½ months and he was diagnosed with CdLS, and our life was forever changed. Gunner is now 3 ½ years old and he is feed by feeding tube. Gunner does not walk but he just started to get around with his specially made wheelchair!!!! Gunner is deaf and nonverbal, but he loves to blow bubbles!!!

A little about the event and its history: Gunner’s grandfather Eugene Carter III raises bucking bulls and has traveled all over the southern states to different rodeos and bull rides for 40 plus years. Gunner’s father, Cole Carter rode bulls and still does on occasion, but he mainly fights the bulls now. There are always 2 bullfighters in the arena and if a bull rider gets hung up and needs help the other the other bullfighter will go to the rescue to help them and pray no one gets hurt! The Carter family is happy to be a part of something that will help a Foundation so close to their heart!

Entry fee: $10 for adults $5 for Students and 6 and under are free.

View event flyer

If you cannot attend but would like to donate to Bulls and Barrels!

Courageous Parent Network: Let’s Make Caregiving a Bit Easier Webinar
2024-08-22 20:00 - 21:00 UTC
Finding resources and organizing information are two common struggles for many parents in our Network. But great news – CPN recently discovered two amazing tools that promise to make these tasks much easier! In this session, we’re thrilled to have the founders of mejo and Librarey with us. They’ll demonstrate how their innovative tools can help parents quickly identify support organizations and streamline care documents for their children. Join us to learn how mejo and Librarey can transform your approach to managing your child’s care needs.

Librarey, part of Comend, is designed for the rare disease and disability community. Beyond being a search engine, it’s a collaborative space where families, caregivers, and advocates impacted by rare diseases and disabilities can find and share resources, connect with supportive communities, and create curated collections customized to their unique needs.

www.librarey.com

mejo (short for ‘me journey’) is a web app that provides parents and caregivers with a better way to simplify, organize and share their child’s most important medical + care information. Easy to use, mejo helps caregivers save time and gain peace of mind by organizing their child’s information into easily digestible views that can be securely shared – with teachers, caregivers, family members and clinicians – in a click.

www.mymejo.com

This event will take place on Thursday, August 22 at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).

Register Here

CdLS Awareness Dinner & Fundraiser Event
2024-09-08 17:00 - 20:00 UTC
Please join us! CdLS Awareness Dinner & Fundraiser Event Honoring Kavin Mistry
Meet Kavin, my remarkable cousin whose journey with Cornelia de Lange Syndrome has been one of resilience and inspiration. Born prematurely with multiple medical complications, Kavin was diagnosed with CdLS. Throughout this journey, Kavin and his family have been supported by the CdLS Foundation of USA. His condition has not diminished his vibrant spirit. Kavin is a social and friendly individual who brings joy to those around him with his love for singing and playing musical instruments. His infectious smile and adventurous spirit are evident in his passion for plane rides and his travels around the globe. Kavin’s story is a testament to the strength and joy that define him, inspiring all who have the pleasure of knowing him.
Sunday, September 8, 5:00pm
Ashirwad Palace
169 South Salem Street Randolph, NJ 07869
Advance Ticket Purchase Required
Event Tickets:
$50 Adults, $30 Kids (age 5-12) Kids under 5 are Free
(Includes a full course dinner buffet & drinks)

Parent University: RETIRING FOR 3 – HOW TO HAVE ENOUGH FOR YOUR OWN RETIREMENT AND THEIRS, TOO
2024-09-12 13:00 - 14:00 UTC
How much is enough for you, as the caregivers? How much is enough for your child? How to incorporate your child’s plan into your own. What is the most effective way to fund the trust? Life insurance? IRAs? Other? How to plan your own Social Security to benefit your child’s future – Learn a technique to identify your options.
Register now

CdLS Foundation East Coast Regional Retreat
2024-09-13 - 2024-09-15 | Camp Saginaw, 740 Saginaw Road, Oxford, PA, 19363, United States
We’re excited to announce the 2024 East Coast Regional Retreat.
Mark your calendars!
Guided by your input, the CdLS Foundation has reimaged what was the National conference into regional retreats. The 2024 East Coast Regional Retreat will be September 13- 15, 2024, at beautiful Camp Saginaw in Oxford, PA. This two-day event offers educational workshops, a fun-filled and action-packed day of activities for siblings, ample time to socialize with those you know, and a wonderful opportunity to make new friends.
The camp is just over an hour away from Baltimore and less than 1.5 hours from Philadelphia. The camp’s beautiful landscape is perfect for learning, sharing, and relaxing. As the only group on site for the weekend, our families can enjoy the amazing activities and landscape Camp Saginaw offers. The camp features modern facilities with multiple workshops, socializing, and lodging spaces.
In addition to workshops, parent and grandparent groups, an active day for siblings, and time to socialize, members of the CdLS Foundation Clinical Advisory Board will be available in small group “Meet the Expert” sessions to answer questions and discuss concerns.
Be on the lookout for more information in emails, social media, and Reaching Out! You won’t want to miss out! See you Sept 13-15 in Pennsylvania.

Courage Parent Network: This Shared Journey: Get to Know the Network
2024-09-19 20:00 - 21:00 UTC
Come meet the faces BEHIND Courageous Parents Network, as well as some of the parents and providers IN the Network. (That includes you, btw.)

Spend an hour with us talking about our shared journey and participating in an open-ended conversation touching upon topics that stretch across this caregiving journey.

As CPN celebrates our 10th anniversary, our staff has been reflecting on how important our connections are, how much they build our capacity to do the things we do at CPN, and how sharing simply makes most things better.

It will be wonderful to see and hear from you In the Room. We look forward to sharing an evening with you.

Register Here

This event will take place on Thursday, September 19th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).

Aubrie's Army
2024-10-05
Our daughter Aubrie Schilling was diagnosed with Cornelia de Lange Syndrome last year at 15 months old through genetic testing at Nationwide Children’s Hospital in Columbus, Ohio. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive, and medical challenges. After this surprising diagnosis, we contacted the CdLS Foundation, which quickly became our main resource for guidance and educational information. Since then, our lives have changed in many ways, but through the uncertainty of a new diagnosis, we found a community within the CdLS Foundation. We are thankful for the help this organization has provided to our family and their ongoing support as we continue to navigate this challenging journey.
We are also grateful to our family, friends, and sponsors for supporting this fundraising event for Aubrie’s Army. In our first year, we raised over $15,000. We hope that this gathering will continue to raise awareness about Cornelia de Lange Syndrome, bring together families traversing through a similar journey, and generate funds to empower the CdLS Foundation, a 501(c)(3) nonprofit organization, in its mission of providing indispensable services and resources!
We look forward to growing this event each year to continue to advocate for sweet Aubrie, the CdLS Foundation, and all those affected by Cornelia de Lange Syndrome. Thank you for your continued support!
Can’t attend but still want to support? Click here to donate to Aubrie’s Army.

WI Road Race
2024-10-05 09:00 - 14:00 UTC
Lace up your …. And get ready to walk, run and have fun while supporting the CdLS Foundation.
Meet Zachary Isaiah Guran! He is 3 years old and was born with a rare syndrome called Cornelia de Lange Syndrome. Zach is an incredibly resilient kid. He consistently deals with some sort of discomfort daily. He struggles with hearing, and he is non-verbal which makes communication and caring for Zach very complicated. Some of his biggest challenges include feeding, swallowing, digestive discomfort, gaining weight (failure to thrive), low muscle tone, severe acid reflux, small hands, limbs, and feet, a weakened immune system, and several developmental delays. My wife and I have learned how to manage Zach’s needs, but we still don’t always get it right and are constantly learning new ways to help him as time goes on. It has been a difficult journey to say the least filled with unpredictable twists, medical mysteries, and scary moments. With that said, being his parents has been equally as rewarding.
To read more about Zach’s journey and Registration Information
Location:
Menomonee Park
W220 N7884, Town Line Rd
Menomonee Falls, WI US 53051

Parent University: THE MYRIAD OF RESIDENTIAL OPTIONS – WHAT AND WHERE ARE THEY?
2024-10-10 13:00 - 14:00 UTC
Let’s hear more from people who have creative scenarios – DIY, Campus, Group Homes, Independent Living. Come to this class prepared for the homework you need to do. How do you get comfortable with even starting? Listen and learn from those who have been successful in setting up and finding a solution that worked best for them.
Register now

Walk for Will and Hope
2024-10-13
The Walk for Will & Hope is returning to Stony Creek Metropark, 4300 Main Park Drive, Shelby Township, on Sunday, October 13.
This event is a wonderful opportunity for community members to come together for a leisurely, untimed two-mile walk to raise awareness for Cornelia de Lange Syndrome (CdLS).
All proceeds from the walk will support the CdLS Foundation, a Connecticut-based nonprofit organization that assists families and individuals affected by this rare genetic disorder. The foundation provides crucial resources, support, and advocacy to improve the lives of those living with CdLS.
We encourage everyone to participate and contribute to this meaningful cause. Whether you walk, donate, or simply spread the word, your involvement makes a difference.
Join us in making strides for Will, Hope, and everyone impacted by CdLS.
If you are unable to attend but would like to donate, visit: https://bit.ly/WillandHope2024

2024 Bank of America Chicago Marathon
2024-10-13
Many runners say that running has changed their lives. Team CdLS runners say that they changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon on Sunday, October 13, 2024. We are so excited to announce that we have an amazing team of 23 athletes this year!! Please support this fantastic team by donating here.
Running not your thing, another way to support the team is to sign up for Curb Crew!
