Growing up, walking, learning and living

  


Growing up, walking, learning and living

A Cornelia will develop, he or she will move around, learn by visiting a school or care center. At a certain age there needs to be a fulfilling day program. Working or maybe just spreading love and and allowing society to show its best by including people that are different in daily life.

Every child has a right to be taught the skills required for the best possible quality of life. Let's see what we have here..

And with so much activity we all need a place to live. There might come a time that the nesting period is over and our Cornelia needs to fly: Adolescence and transition to a new living environment

Meet our experts

We have done our best to invite those from around the world to give you the insights you hope for. Professors, teachers, experienced parents and siblings will discuss the topics for the best quality of life possible. Our motto; TOGETHER!

Marleen Janssen

Marleen Janssen

Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands.

Marleen has been Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands since 2008. She specialises in congenital (like with CdLS) and acquired deafblindness. Her research is mainly focused on intervention studies in children and adults who are congenital deafblind, which impact communication, language acquisition, development and learning. 

Innovative instructional methods are used to coach teachers, parents and support workers, improving their insights and skills for better interaction and tactile communication. Theories from developmental psychology on attachment, intersubjectivity and self-determination form the basis of these investigations which are performed in classrooms, homes and group home settings.

She has a structural collaboration with Royal Dutch Kentalis, where she worked for 25 years at the school Kentalis-Rafaël, for children with deafblindness.

In her studies Marleen has seen a few children with Cornelia de Lange syndrome. Based on these studies she has presented at the CdLS World Conference in 2013 in Buenos Aires (Argentina).  

Bernadette Dalingwater

Bernadette Dalingwater

Bernadette has just launched her new business: The Sibling Voice, giving a strong voice to the family member that is sometimes forgotten. 

Michael Feeney, Bernadette's brother, passed away in 2017 one week shy of his 61st birthday. Bernadette has lived the life of a sibling to someone with cdls for 52yrs. She speaks truthfully and openly about a life of challenges and joy mixed with a constant search to find balance. Bernadette runs workshops and speaks to and about being a sibling to a person with special needs. Feel free to seek her out and chat.

Bernadette is a sibling of a person that had CdLS. Bernadette is the federation leader for Canada  and has been President of CdLS Canada for 25 years. 

Jenny Rollo

Jenny Rollo

Jenny has been a vocal disability advocate  for over 35 years supporting CdLS families in Australia and nearby countries, taking on government policies to achieve better outcomes for individuals and successfully lobbying governments for disability accommodation within the local community.

She works part-time as Projects Manager at Genetic Alliance Australia. This umbrella support organisation strengthens families with rare genetic conditions living in rural and remote areas of NSW. People whose conditions are so rare there are no recognised groups are also included in the programs.  Backing leaders of condition-specific groups with training and information is a primary focus. 

Being the mother of David (36 years, CdLS), Jemma and Stuart, and grandmother of two adored grandchildren, Jenny has lived generational experience of issues families face when raising a child with disabilities. Finding a balance where all family members are able to thrive is the aim.

Pick your battles, be a strong voice for your child, but don’t forget the “others”. Be kind to yourself.

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.