The CdLS Blog
The Foundation's blog informs families, doctors, friends and whoever else drops by, about CdLS and the Foundation.
This blog serves as a pipeline for sharing Foundation news, research, updates, and details about upcoming CdLS events on a more current basis.Please note: It is not a place to discuss medical issues nor is it a support group forum.
To the Me of Ten Years Ago
"You...yes you, holding that sweet baby girl in the plaid dress. Let's chat.You don't know it yet, but that sweet baby girl has a secret. One that will slowly and not completely reveal itself over the next few years.It's going to break your heart. Repeatedly.But I promise you, it will be okay.No. Really.Sure, you'll need therapy. And you'll get a bottle of Prozac with that therapy. It'll help. It will help you crawl out of...
Share Your Experience in Advocacy
"Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. The tools will be part of an accessible online toolkit, with advocacy resources grouped by topic area. They would like to include a personal story that demonstrates the importance of advocacy from an individual,...
Countdown to Awareness Day - Day 2
We love hearing about families' stories and travels, especially when CdLS can unite people from around the world. Read about one U.S. family's journey to New Zealand to meet another CdLS family! NewZealand_CdLSFamilyTrip.pdf...
National CdLS Awareness Day
What is National CdLS Awareness Day? National CdLS Awareness Day is observed the second Saturday of May each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Since CdLS is unfamiliar to most people, including professionals in the medical community, Awareness Day--celebrated since 1989--is an opportunity to educate all segments of the population about the syndrome. Each year, parents, volunteers and others request official Awareness Day proclamations from governors and local leaders;...
de Lange Society - 2013 induction
People gathered in Avon, CT from all around the country. Some are teachers, others are doctors. Some work in business, others work from their homes. People from various locales and time zones came together to honor their friends and colleagues who care so deeply about those with CdLS. These individuals were honored at the 2013 de Lange Society Recognition luncheon on April 6. For 20 years or more, the inductees have shown dedication and...
Special Needs Planning Webinar - 3/19, 3/20
In honor of Disability Awareness month, Protected Tomorrows is hosting this informative, free webinar "5 Things Every Family Needs to Know about Special Needs Planning."To help Protected Tomorrows celebrate, they are hosting a FREE Special Needs Planning webinar for families and professionals. Join their webinar and learn what you need to know about: · Your Vision of the Future - Think Outside the Box · Government Benefits - SSI, SSDI & Medicare & Medicaid · Legal Considerations - Special...
From the Mind of Richard Branson
In a recent article posted on LinkedIn by Richard Branson, we read a very interesting perspective from the billionaire business mogul. He said, "As I have said before, there is no real difference between work and play - it's all living. So your workspace can simply be wherever you are, whatever you are doing." We couldn't agree more. We have volunteers around the country raising awareness for CdLS and often times also fundraising for the CdLS Foundation. These...
Greensboro resident joins the Board of Directors of the Foundation, giving a voice to others with CdLS
The CdLS Foundation is proud to announce that Maegan Lowrey has joined its Board of Directors, which serves as a guide for the national nonprofit, located in Avon, CT. Lowrey is the first person with CdLS to serve on the Board of Directors for the Foundation. "We are so happy to have Maegan join our Board of Directors," said Marie Concklin-Malloy, executive director of the CdLS Foundation. "As someone with CdLS, Maegan will bring a different perspective...
Making Decisions with Parent to Parent Connections
"Informed decision-making is important in many situations in our daily lives, from buying groceries to choosing a plumber, but it is particularly crucial when it comes to healthcare and the health of our children. That is why Family TIES and Parent to Parent have Parent Advisors who share their own experiences, listen, and support your needs." "Parent Advisors take their experiences to a higher level by helping community, state, and federal agencies develop services to enhance...
Beat the Winter Blues
Studies and other publications (like the one found here in Time) have found that the middle to end of January is the time when people are the most "down." The holidays are over, we spend much more time indoors, the temperatures often drop...it's no wonder people feel so blue. Here are some ways to combat the winter blues and get your new year rolling on the right track: Get moving- Whether it's committing to that new gym...
