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.

1p36 Deletion Support & Awareness needs your help! We are on a quest to win an award ranging from $25,000 to $250,000 through Chase Community Giving. Here are the basics: the Top 100 eligible organizations with the most votes will share $3.0256 million—the top charity will win $250,000, and the remaining 99 charities can earn anywhere from $25,000 to $100,000.

Now that we’ve got your attention,  it’s time to start generating buzz for 1p36 Deletion Support & Awareness—and time to show the world why our organization is worthy.. And to gather the most votes, we need to get the message out to our friends, family, and supporters, but also the broader community of people in your city, state and region.

Voting runs from Tuesday, November 8^th through Tuesday, November 22^nd. Unlike the Pepsi Refresh Everything fundraiser we tried last year, you can only vote once. So it is very important that we really get the word out to everyone you know. All voting is done on Facebook through the Chase Community giving App. You will need to accept the terms of the app and then get voting. You can find our voting page by going to http://bit.ly/lAmtmb or you can search for 1p36 from the Chase Giving Page. If you have any problems please email me at k.shirtcliff@1p36dsa.org.

One effective and easy way to get the message out is through the media. A simple mention in the pages of your local newspaper or on the airwaves of your local radio or TV stations, or community blog can potentially generate real results and get us closer to winning. If you need help drafting a press release please contact us, we have sample drafts available. You can spread the word to people you know through Facebook, Twitter, and if you write a blog. If you have children who are old enough to have a Facebook account, get them involved. Have them spread the word with their Facebook friends. Print out a flyer they can take to school to get their classmates to vote. Involve your kid’s special ed. teachers and therapists. There are hundreds of ways to get others involved, these are just a few. During this campaign we will post updates to the 1p36 DSA Facebook page as well as the Facebook support group. If you think of a great way to get more people to vote, please let us know.

After several months of hard work, 1p36 Deletion Support & Awareness is very excited to launch our new redesigned website. The board of trustees felt that a new website design was needed to better tie in with our new logo that was debuted in July at the Annual Conference. The new website is clean and modern in appearance, easy to navigate and has much more information available than the current site. The new website platform also allows us to continually update information and keep the 1p36 Deletion community abreast about the newest information about the syndrome, conferences, fundraising and much more. The new website is the one place to go for the 1p36 Deletion Support & Awareness Blog, Apparel Shop and Annual Conference information. Our hope is that both families with a new diagnosis as well as those who have been part of the community for years will be able to get all the information they may need from the new site.

There is also a registration page that will allow you to access members-only information. Right now if you register on the website you will be able to access the 2011 Annual conference videos. Many of you have been asking and they are finally available. All you need to do is register and click on the “for families” tab, then conferences and follow the links to the 2011 conference. The sound quality is not as good as we would have liked but if you turn your speakers up loud you will be able to listen to many of the Speakers who presented at the 2011 1p36 Deletion Support & Awareness Annual conference. The web address is still www.1p36dsa.org so go visit and explore today.

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.  (*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.

Calendars will printed and shipped in one batch to avoid unneeded costs.
 
     Deadline for Orders: November 21st, 2011
     Estimated Ship Date:  December 5th, 2011

*Shipping outside the US?  Yes we can!   However, there will be an additional charge for shipping 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.

Halloween is around the corner and planning for a child with special needs to participate in all the fun can be challenging.  1p36 Deletion Syndrome parents are used to getting creative about a lot of things including costumes and trick-or-treating.  Here are some thoughts and ideas to help.

Costumes A little creativity and forethought can help with costume planning.  For my 9 year old daughter with 1p36 Deletion Syndrome, I have a lot to think about for a costume.  It needs to be one that she will be comfortable in and that will allow for diaper changes and g-tube access.  She won’t stand for a hat staying on longer than 30 seconds and she won’t keep her hands away from face make-up.  So these are things we avoid.  Because she is in a wheelchair, the costume has to be one that she can stay in while seated and that doesn’t interfere with the chair’s belts and straps. 

Other costume considerations for a special needs child might be

• avoid accessories that could be a choking hazard.
• consider visibility both for the child to see out easily and for others to see him or her on a dark street.
• try to make it easy to get on and off for you and your child.
• If your child has sensory issues, think of a costume that uses the child’s clothing.

Check out these websites for costume ideas:

• http://bit.ly/rq5TBr - Ideas for children with sensory issues. If you see an idea that interests you, click on ‘view this resource’.
• http://bit.ly/JuJ1  - Great wheelchair costume ideas and advice

Trick-or-Treating

We have never gone trick-or-treating in our neighborhood.  It’s too difficult to imagine getting my daughter’s wheelchair up the steps of every house on the block.  I would be exhausted by the end of the night.  Don’t get me wrong, if my daughter wanted to do it, I would ignore my aching back and muscle through!  Luckily there are other options for Halloween fun such as church functions, trunk-or-treat community events and merchants both downtown and at the local malls that entertain trick-or-treaters on Halloween night.  Do an internet search or look through the local paper to find events in your area. Some children (including mine) can easily be over-stimulated so plan ahead and bring things that can help your child feel comfortable.

Have fun and enjoy your Halloween.  We look forward to seeing your pictures!