Callie Hoots Speaking at the 2010 1p36 DSA Conference

At the 2010 1p36 DSA conference in Salt Lake City, UT we heard from Callie Hoots about People First Language and the "R" Word.  Callie was 22 years old at the time and has 1p36 Deletion Syndrome.

Here is video of Callie's speech.  She is an inspiration to all of us!

The People First Movement seeks to eliminate stereotyping of people with disabilites. They promote respectiful lanquage that places the person first and then the disability.  

Callie's mom, Cyndi Hoots says: "People who do not have a love one who is challenged by a disability, those who are companionate and really want to use the correct terms and language, look to us for guidance and listen to our use of language for the correct way to say things.  Therefore, it is very imperative that we, the ones who advocate and support those who are differently abled, use People First Language and therefore, lead by example." 

For examples of People First language and more information, please visit 

http://www.txddc.state.tx.us/resources/publications/pfanguage.asp

You can also take the pledge to End the Word at www.r-word.org.

Read about registering for this year's conference and an exciting conference scholarship opportunity in the
Winter/Spring edition of the 1p36 DSA newsletter!

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/  

National Organization of Rare Disorders

The Global Genes Project

Happy Holidays from 1p36 DSA!

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.