What about US...

  


What about US...

What about us, the parents, the brothers, the sisters, the carers?

It certainly is worth the effort to strengthen ourselves, our relationships by claiming time for yourself. And it is not 'weak' or 'wrong' to cry, to feel overwhelmed. But there are possibilities for 'refuelling', taking a very special vacation…

What have the 'elders' done to prevent their life from collapsing? What errors did they make that we can avoid? What lessons can they recommend? 

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!

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.

Gerritjan Koekkoek

Gerritjan Koekkoek

Father of Rai

He is father of Rai (CdLS, November 1999). Motivated to know all you need to know about CdLS he joined the dutch 'vereniging Cornelia de Lange syndroom' and became chairman of this group in 2008. In Buenos Aires at the world conference about CdLS in Argentina he was elected chairman of the CdLS World federation. 

Gerritjan is an Information Architect. Within the CdLS World federation executive council he is especially advocating the role of family members and the CdLS Patients so they are involved in Knowledge Development and sharing their experience with other family members, professionals or researchers.

Gerritjan is currently past-chairman in the CdLS World Federation Council executive team and chairman of the dutch 'vereniging cdls' 

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.