The 2nd Annual Great Garage Sale is here! See fundraisers below.
Welcome!
Welcome to the new Canadian Ectodermal Dysplasia Syndromes Association (CEDSA) website.
Our mission here at CEDSA is to enhance the quality of life of those impacted by ectodermal
dysplasias through education, service, and supports while serving as a
national information and networking resource.
We invite you to join us, read information on the site, and send us your thoughts!
News
U.K. Ectodermal Dysplasia Society's Latest Newsletter
Be the first to read what is happening across the pond with families and individuals in the U.K. with an ectodermal dysplasia syndrome! Click here to read the newsletter.
Fishing Derby Donation
Thank you to the Castleford Fishing Derby Committee!
On April 26, members of the Castleford Fishing Derby presented CEDSA with a $2,600 donation from funds raised during the derby this year. We are overwhelmed by the support, and the kindness shown from our community, thank you from the bottom of our hearts!
CEDSA helps two Canadian kids Stay COOL!
CEDSA is very proud to have presented an Arctic Heat cooling vest to two Canadian youth to help them stay active and cool as they pursue their love of sports! Kyle loves hockey and being busy - his Mom Kim says he loves his new vest purchased through CEDSA's fundraising efforts! Alexa, an incredibly talented dancer, was the CEDSA contest draw winner for her vest and told us it "fits perfectly." Stay cool, Kyle and Alexa!
New Not For Profit Act
CEDSA has been working with a law firm out of Toronto to try and establish charitable status. It will be a challenging process with the New Not For Profit Act now in place, the first time in almost 100 years that new legislation governing not-for-profits has been passed. We will keep you posted as we move towards obtaining this important goal!
Become a SUPPORTER
Instead of memberships, CEDSA is asking those who would like to help CEDSA grow and accomplish its mandate to become a supporter. Visit our supporter page to help us grow together today!
Share your Tips!
We love hearing from you with tips and tricks that help you cope with the challenges of having ectodermal dysplasia - Jenny wrote to us with some great advice on hair products to use and what to avoid. Click here to read more
We Are ALL Connected - CEDSA is a member of the International ED Network.
Read our first joint newsletter! Thank you to Diana Perry, Ectodermal Dysplasia Society (U.K.) for pulling it together for us. If you would like a copy emailed to you, please contact CEDSA directly. Click here to read more.
Fundraisers
The 2nd Annual Great Garage Sale
Our directors are selling their junk (we mean, treasure) to raise money for CEDSA in their hometowns. The first will be held in Renfrew, Ontario on May 12. Click here to get all the details.
Straumann Event
On Friday, September 21 at 7:00 p.m., as part of the ITI Congress Canada which is being held in Toronto on September 21-22, 2012, Straumann
Canada will be hosting an evening of friends, fun and good times for those attending the Congress. All proceeds from the ticket sales will be donated to CEDSA. On behalf of our directors, families and individual supporters, CEDSA would like to thank Straumann very much for this incredible support. We are proud to affiliated with such a great company. CEDSA will be speaking at the dinner. To read more, please visit www.iti.org/congresscanada and to learn more about Straumann, visit www.straumann.com.
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The Last Kiss - Thank you to Horton Township!
Horton Township hosted a Murder Mystery night with some proceeds going to buy a cooling vest for Jacob, a four-year-old with HED. They successfully
raised $250 and presented Jacob and his grateful mother, Meghan, with the cheque at a council meeting held earlier this year. Dean Salisbury from Arctic Heat offered to custom-make Jacob's vest for the perfect fit and it should be ready just in time for the warm weather. Thank you Horton Township, Recreation Committee and all those who attended this great night.
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Articles
Eye Problems and Ectodermal Dysplasia
The University of Liverpool Ophthalmology Research Unit has an excellent online article called Eye Problems and Ectodermal Dysplasia which can be found by clicking here (http://www.liv.ac.uk/). Thank you to the Sprung family for sending us this resource.
For Health Care Providers, Physicians and General Use
Under the Sharing section of the website, there will be two article sections, one specifically geared towards health care providers and physicians looking for research, genetic and medical information to better treat their patients. There will also be a more generalized article section. Both sections are open to the public, however, are separated to give health care providers easy access to information on EDS. As ectodermal dsyplasias are not common, letting your health care providers know this information is available to them may be of benefit.