Saturday
Mar172012
Saturday, March 17, 2012 at 6:58PM What is 1p36 Deletion Syndrome?
1p36 Deletion Syndrome is a chromosome disorder that can be characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. Though many people have never heard of 1p36 Deletion Syndrome, it is the one of the most common chromosome deletions. Learn More
Saturday, March 17, 2012 at 6:58PM Wednesday
Feb292012
Wednesday, February 29, 2012 at 9:43AM 
Today is World Rare Disease Day!
There are over 350 million people worldwide affected by a rare disease. In the US, a rare disease is defined as one that effects fewer that 200,000 individuals in the country at any given time. In Europe its defined as one that effects fewer than 1 in 2000 births.
1p36 Deletion Syndrome is a Rare Disease. It is estimated to effect only 1 in 5-10,000 births. Please join us and millions of people across the world in support of our loved ones with 1p36 Deletion Syndrome and all people who are living with rare disease!
For more information about World Rare Disease Day please visit:
http://www.rarediseaseday.org/
Thursday
Dec222011
Thursday, December 22, 2011 at 1:09AM 
Tuesday
Dec062011
Tuesday, December 6, 2011 at 11:45PM A Big Win and a Big Thank You!
A Big Win and a Big Thank You!
A heartfelt thank you to everyone who voted and worked to get votes in the recent Chase Community Giving program. Because of you, 1p36 Deletion Support & Awareness won $25,000! It is the largest donation/grant that 1p36 DSA has recieved to date. The money will go a long way in helping children and adults affected by 1p36 Deletion Syndrome.
We finished the contest at 85th place with 1,493 votes, well within the top 100 charities who will share in over 3 million dollars of grant money.
1p36 DSA's mission is to help individuals with 1p36 Deletion Syndrome by providing support and education to families and caregivers and by working to increase awareness of the syndrome. Winning the grant from Chase means some ideas on how to achieve our mission will become a reality.
We'll be asking you to give us input in the next couple of months about what things you would like 1p36 DSA to be doing to work toward its mission. But you don't have to wait for us to ask! If you have an idea or a question, please email us at info@1p36dsa.org. We may not be able to implement every suggestion we get but we would love to hear from you!
So thank you to Chase for this giving us this opportunity to obtain a grant. And, thank you to all our wonderful supporters for making sure that we got it! We did it!
Thursday
Nov172011
Thursday, November 17, 2011 at 6:06PM Votes, Calendars and Deadlines..Oh My!
Time is flying by! Thanksgiving is next week and Christmas is just around the corner. We want to make sure that a couple very important deadlines don't whoosh past without you knowing.
Deadline #1
Voting ends on November 22nd (thats next Tuesday!) in Chase Community Giving on Facebook. That means we have less than five days to make sure that 1p36 DSA is in the top 100 Charities to win part of over 3 million dollars. We need all the votes we can get. If 1p36 DSA is in the top 100, we will win $25,000! So please go follow the link below and vote and encourage your friends and family to vote as well. The money would go a long way in helping children and adults with 1p36 Deletion Syndrome.
Click here to go to 1p36 DSA's page on Chase Community Giving.
(You'll need to log into your Facebook Account)
Then click "LIKE" Chase Community Giving in the top lefthand corner.
Then click "VOTE & SHARE". That is all it takes!
Deadline #2
Monday November 21st is the last day to get your orders in for the 2012 1p36 Deletion Support & Awarness Calendar. The calendars will be printed after the deadline and shipped around December 5th. Just in time for Christmas!
The calendar can brighten up any office. Even messy ones!
Each calendar is $20 with all profits going to 1p36 Deletion Support & Awareness.
The calendar is spiral bound, 8 1/2" x 11" when closed and 11"x17" when open. Every month features 6 photos of beautiful individuals with 1p36 Deletion Syndrome.
To place your order through Paypal CLICK HERE. (*Additional cost of orders outside the US, please see below.)
If you would prefer to order by check, please make the check out to 1p36 Deletion Support & Awareness. (No Cash Please) Mail to 1p36 Deletion Support & Awareness, Attn: Karen Bess, 48 Cornfield Lane, Warwick NY 10990 Include a note regarding how many calendars you are ordering and the address where you would like them sent. The check must be recieved by November 21st.
*There will be an additional charge for shipping outside the US so please email c.daggett@1p36dsa.org before placing your order. Include your address and how many calendars you are ordering. The additional shipping cost will be calculated and emailed to you so that you can include that amount in your payment.