Calendar of Events

Whether you're looking for the next family gathering, a golf tournament, or just want to see what's going on in your region, the calendar of events has all the what, when and where you need.

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February 2023

A Day of Remembrance

February 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…

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Rare Disease Day

February 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.

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March 2023

Dyadic Coping: Managing Caregiving Stress as a Couple

March 15 @ 8:00 pm - 9:00 pm

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…

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Grieving in Relation to Others

March 21 @ 8:00 pm - 9:00 pm

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…

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April 2023

Multidisciplinary Clinic for Adolescents and Adults

April 1

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…

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Understanding and Addressing Pediatric Medical Trauma

April 12 @ 8:00 pm - 9:00 pm

Anyone, from infancy through adulthood can experience medical trauma. Caregivers can too. Understanding what medical trauma is and knowing the signs can help you get support for your child and family. Dr. Meghan Marsac, pediatric psychologist and pediatric medical trauma expert, and Melissa Hogan, mother of a child with a rare disease, wrote the book “Afraid of the Doctor” to help families who experience stressful and potentially traumatic medical events. Join us in conversation with them to learn more about…

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May 2023

CdLS Awareness Day

May 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

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2023 New England Golf Classic

May 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 30th Annual New England Golf Classic to be held on Monday, MAY 22, 2023! 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! Learn more

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October 2023

2023 Bank of America Chicago Marathon

October 8
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2023 MCWP & PLM Amber Gaines Memorial Golf Classic

October 9

The CdLS Foundation’s longest running major event - the MCWP & PLM Amber Gaines Memorial Golf Classic – is kicking off its 35th year on Monday, October 9, 2023, at the beautiful Tapawingo National Golf Course in St. Louis, MO. Registration and lunch begin at 11 AM with a 12:30 PM shotgun start, followed by cocktails, dinner, and prizes at 5:30 PM. Don’t miss the best golf event in the Midwest!

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