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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

Monday
Jul132015

Can't Wait to See Everyone

The 2015 1p36 DSA conference starts next week and we can't wait to see everyone. We are going to have a great turnout with around 60 families registered. The conference agenda can be downloaded here. You can also download the conference YAPP app on your mobile device by going to http://my.yapp.us/1P36  Just follow direction on the YAPP website. Once you download the app you can see the agenda, hotel information, directions and more.

Wednesday
Apr292015

Have you met Captain Chromosome?

Captain Chromosome invites you to run or walk your way to support 1p36 DSA!!!! Announcing the Captain Chromosome Virtual Fun Run June 15 through June 30th. How does it work? A virtual run means that anyone, no matter who you are or where you are, can participate and show support for 1p36 DSA. Here is what you need to do:
1. Like the Captain Chromosome Virtual Fun Run page. http://on.fb.me/1IIrM8V
2. Decide on a day between June 15th and June 30th for your walk/run and then register for the run here: http://bit.ly/1buJx17
3. Invite your family and friends to join you!
4. Post pictures of your walk/run on the Captain Chromosome Virtual Fun Run Facebook Page and be eligible for fun prizes!

To learn more about Captain Chromosome and to follow his adventures go to https://www.facebook.com/CaptainChromosome

 

Saturday
Apr042015

2015 1p36 DSA conference registration now open

After a lot of hard work we are pleased to announce that registration for the 2015 1p36 Deletion Support & Awareness Conference is now open. We are expecting to have a wonderful time with a fantastic turnout. Last year we had almost 350 people attend representing around 75 families and we hope to seen that many of you, if not more, attend this year.

 

Sunday
Feb152015

1p36 DSA now accepting applications for 2015 Conference Scholarships

Every year 1p36 Deletion Support & Awareness is privileged to be able to offer scholarships to the annual 1p36 DSA Conference. This year 1p36 Deletion Support & Awareness is able to provide 5 scholarships to attend the 2015 1p36 DSA conference in Orlando, FL July 23-25th, 2015. Each scholarship includes 3 nights hotel at the Wyndham Grand Orlando Resort Bonnet Creek and free conference registration for 2 adults and the individual with 1p36 Deletion syndrome.

Eligibility Requirements:

  1. Must be your first time attending a 1p36 DSA conference

  2. Must have a child or personally be affected by 1p36 Deletion Syndrome.

  3. Applicant would not be able to attend the conference without financial support ( no income verification required ).

  4. Must Complete and submit scholarship application by the due date below

  5. After attending conference, applicant must be willing to write a short/brief article for the 1p36 DSA website about the experience within 30 days of the conference.

  6. Please do not apply unless you are certain you can attend if you are awarded the scholarship.


You can find the application here.

 

Sunday
Dec072014

Fundraise with something you enjoy. (in this case, beer)

After hosting a few fundraisers and seeing what was successful and most effective, here are some ideas to help you setup a great fundraiser for 1p36 Deletion Support & Awareness.

Start early – on the order of 4-6 months before you plan to have the fundraiser.  This much advance planning will help you find time for everything and make it easier for you to coordinate with potential host locations.  It also allows adequate time to secure donations if you pursue them as a means to raise money.  Some companies require donation requests to be made with a minimum number of days or months in advance (I encountered one to be 6 months).

Follow the guidelines and recommendations in the 1p36 DSA Fundraising Guide (available at www.1p36dsa.org/fundraising).

Look for and consider a host location that you’d spend time at anyway – if it’s a fun/appealing enough place to draw you (and others) in without there being a fundraiser, it’ll already be well attended; the extra incentive to help a good cause will simply improve your turnout.  Focus on local businesses instead of popular chains/franchises – the earning possibilities can be more flexible and attendees could be more generous while supporting a local business.

Focus on raising money through contributed/donated items (100% proceed, raffle, auction) rather than raising money via some small % of sales during the event.  Definitely consider raffle giveaways or silent auctions; request donations for items that you (or people in general) will be interested in.  Be persistent in your requests: cover a lot of sources and follow-up if necessary. Also put together a raffle/auction brochure book to send with friends/family to their offices and other places that may allow exposure of the event.  Allow one page per item, with a quality picture and give a good description with approximate retail value.  It’s also a good idea to preface the item pages with a page about 1p36 DSA (such as the “About 1p36 Deletion Syndrome page in the 1p36 DSA fundraising guide) and even a personal intro page with something about your child (including a picture or two); in fact the personal part could be great use as a cover page.  During the fundraiser, you can pull out the pages for each item and place them out to advertise the available items (if you don’t want a table full of donated goods cluttering the area).

Promote the fundraiser at local events (where there’s already community support) and share event flyers with businesses that allow it (i.e. those that donated).  Advertise as much as possible on social media: Facebook, Google+, Twitter, Evite, blogs, website forums, etc.  Begin advertising at least one month in advance but increase starting 2 weeks prior – extra emphasis in the week before.

At the fundraiser, have a well placed and visible sign that represents 1p36 DSA.  You should include a photo of your child or a digital photo frame with a collection of pictures (we showed a mix of various 1p36ers).  Also have a separate stand alone “donations” or “just because” vessel (vase, bowl, jar) so people can drop cash if they’re in the extra giving mood.  It could be helpful to display a menu of prices (depending on what you have to offer: raffle tickets, wine/beer flights, % contributed, silent auction info, etc)

Using the above mentioned techniques, we raised over $3,200 across three separate fundraisers!  With the first two, we utilized % of sales and raffles to raise money.  For the 3rd, we had raffles and a simple “donations” vase in addition to a more creative way of raising money (compared to just going for a % of sales).  This creative fundraising method was possible via 3 contributed kegs of beer that we received (the fundraiser was at a restaurant/gastro pub).  Since the kegs of beer were completely donated, the restaurant set up a “name your price pints” promo for those beers with a stated minimum.  While $5 was the minimum price, there were people donating $20 per pint; we raised much more money than we would have through a set % of sales!  Additionally, there was still beer left over at the end of the fundraiser, so we held mini follow-up fundraisers to finish off the kegs and raise more money.

Some of the raffle items that were donated and offered in raffle packages included gift cards/certificates to local businesses (restaurant, retail and service/entertainment), gift baskets, wine, beer, chocolate, coffee and merchandise/clothing.  Some of the more popular raffle options were spa packages, an iPod nano and Disneyland tickets, in addition to area-centric packages that included a collection of donations from businesses in a common area/community. 

Hopefully this feedback and shared experience helps steer you in the right direction – it should with the aid of the 1p36 DSA Fundraising Guide.  Go out there, have some fun and create awareness while raising money for the organization!

Jon and Diana Marshall