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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
Mar152014

2014 Conference Registration and Scholarship information

1p36 Deletion Support & Awareness is pleased to announce that the 2014 conference registration is now open. You can click here to go to the registration page. Early bird prices will end May 15th. We can't wait to see everyone and it will be here before you know it. More details about the conference can be found on the conference page.

We are also offering scholarships to this years conference again. We firmly believe that attending a 1p36 DSA conference can be a life changing experience but know that it can be financially challenging for many families. That is why we have set up a scholarship program for those who have never had the chance to attend a conference. For details about the scholarship program please click here. Scholarship applications must be received by April 19th, 2014.

Sunday
Dec152013

Guidestar and Greatnonprofit Awards

For Immediate Release

1p36 Deletion Support & Awareness Has Reached the GuideStar Exchange Bronze Participation Level as a Demonstration of Its Commitment to Transparency

BEND, OR1P36 DELETION SUPPORT & AWARENESS has received the GuideStar Exchange Bronze participation level, a leading symbol of transparency and accountability provided by GuideStar USA, Inc., the premier source of nonprofit information. This level demonstrates 1p36 DSA's deep commitment to nonprofit transparency and accountability.

"We have worked hard to showcase our progress toward our mission, and our long-held belief in being transparent about our work, to our constituents," said Ken Shirtcliff. "As a GuideStar Exchange participant, we use their platform to share a wealth of up-to-date information about our work to our supporters and GuideStar's immense online audience of nonprofits, grantmakers, individual donors, and the media."

In order to be awarded the GuideStar Exchange logo, 1p36 DSA had to fill out every required field of our nonprofit report page on www.guidestar.org for the Bronze level of participation.

"I encourage you to check out our profile on GuideStar to see what we're all about," added Ken. "We are engaged in exciting initiatives, and we are thrilled to have another platform for communicating our advancement and progress."

About the GuideStar Exchange

The GuideStar Exchange is an initiative designed to connect nonprofits with current and potential supporters. With millions of people coming to GuideStar to learn more about nonprofit organizations, the GuideStar Exchange allows nonprofits to share a wealth of up-to-date information with GuideStar's many audiences. Becoming a GuideStar Exchange participant is free of charge. To join, organizations need to update their report pages, completing all required fields for participation. The GuideStar Exchange level logos, acknowledged as symbols of transparency in the nonprofit sector, are displayed on all Exchange participants' nonprofit reports.

Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical community.

Friday
Nov222013

2014 Calendars now on sale and help 1p36 DSA while you shop

Did you know that there are many ways that you can earn money for 1p36 Deletion Support & Awareness while you are doing your Christmas shopping online this year.

The new 1p36 DSA merchandise store is now open and the 2014 1p36 Deletion Support & Awareness Calendars are hot off the press. We also have hats, magnets, bows, wristbands and more. All profits from these items go directly to 1p36 DSA.

By creating an account with iGive.com, you can shop at the stores you know and love - over 1300!. A percentage of what you spend is donated to 1p36 DSA (on average 3%). The stores pay for it all. You never pay more, and sometimes pay less with coupons and deals. The optional iGive Button is a simple web browser app, easy to install and uninstall. It automatically kicks in at participating stores. Don't want the app? Just start your shopping trips by going to iGive.com. Shop normally (no special codes, no special anything) at any of over 1300 stores. The Button works in the background to let them know you're helping when you shop.

You can also earn money for 1p36 DSA by shopping at smile.amazon.com. AmazonSmile is a simple and automatic way for you to support 1p36 DSA every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to 1p36 DSA.

Monday
Nov112013

Caregiver Quality of Life Survey

In an effort to understand the needs and challenges that parents and caregivers face in raising a child/family member with 1p36 Deletion Syndrome, we are conducting our first ever Caregiver Quality of Life Survey.  The information you provide in this survey will help 1p36 Deletion Support & Awareness better serve our community by identifying needs, determining resources, and providing support. Your responses to these questions will be anonymous and will be combined with other members of our community.  The topics we will cover include:  Basic demographics, Childcare, Self-care, Support, Planning for the Future, Family Relations, Social Life, Work life, Psychological Well Being, and Sharing Resources. It should take between 10-15 minutes to complete this survey.  The survey will only remain open until December 8th, so please take the time now to complete it.  We really value your opinion and experiences.

We are asking all parents and primary caregivers of a person with 1p36 Deletion Syndrome to fill out this survey. We encourage both moms and dads to participate as each person can share a different perspective on how raising a child with 1p36 Deletion Syndrome affects them. To complete the survey, please go to www.surveygizmo.com/s3/1338577/1P36-Family-Quality-of-Life-Survey Please feel free to forward this link to any other 1p36 caregivers who may not know about the survey. 

If you have any question or concerns about the survey please contact board member Tod Oliver at t.oliver@1p36dsa.org.

 

Monday
Oct212013

2014 Conference Preview

We are so excited to announce the dates and location of the 2014 1p36 Deletion Support & Awareness Conference and it is destined to be an unforgettable experience. The conference will be July 17th through July 20th and will be hosted at The Great Wolf Lodge in Cincinnati/Mason, Ohio.

The Great Wolf Lodge is a Northwoods-themed resort packed with fun for everyone. It features a 79,000 square foot indoor waterpark where you can experience the thrills of their 15 waterslides or relax on an inner-tube in the lazy river. The outdoor pool has zero depth entry, sprinklers and plenty of shaded room under the umbrellas to relax and visit. Take a look at www.greatwolf.com/mason/waterpark to see and read more about the fun.

When you want to have some dry fun, there is an arcade, bowling alley, putt-putt golf, a spa for the kids, a spa for the adults and so much more. Check it all out at www.greatwolf.com/mason/explore/family.

Your Conference registration will include Breakfast on Friday and Saturday as well as lunch Friday and Saturday, but there are also many dining options within the lodge. There are two restaurants, a pizza place, a snack shop, ice-cream and bakery, Grizzly Rob’s Bar and a Starbucks. You can find the delicious details at www.greatwolf.com/mason/amenities/. There are many restaurants near the hotel as well.

After a fun filled day of informative and inspiring speakers, bonding with other families, good food and adventurous water fun, you can end the day with story-time by the fire and fireworks in the sky. What else could we possibly need? 

We have secured an amazing family suite rate of $129 a night plus tax and that includes full use of the water park. These rooms sleep up to six adults with two queen beds and a pull out queen- sized couch.  We also have King suites available for the same price, which sleeps four adults with a pullout couch.  All rooms include flat screen TVs, coffee maker, wet bar, mini fridge, microwave and four waterpark passes.  You can purchase extra waterpark passes for $40 and are good for your entire stay.  The room rates are available from July 14th through July 23rd so you can extend your stay and make a full family vacation out of it! This is such a great deal!

We are so excited to share Cincinnati with all of you! There is so much more to experience outside of Great Wolf Lodge. There is a walking path that leads to Kings Island Amusement Park next door to Great Wolf Lodge if you want some more adventure. Closer to downtown Cincinnati you can visit the Cincinnati Zoo, The Freedom Center, Newport Aquarium, The Cincinnati Museum Center, The Horseshoe Casino or go for a ride on the B&B Riverboat. Take a look at www.Cincinnatiusa.com to explore all the reasons to extend your stay in Cincinnati!

More information will be available in early 2014 including registration fees, speakers and conference agenda. We are having a blast planning some exciting things for everyone!  Most of all we are looking forward to our 1p36 Family being together!!!

Tamara Lee & Melissa MacKendrick

2014 Conference Co-hosts