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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

Entries in Fundraising (2)


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

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


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 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.