GIST Awareness Day - July 13th 2014

Help us make and display 20,000 origami boats and raise $200,000 for GIST research.

The Life Raft Group is proud to announce the inaugural GIST Awareness Day! We wanted an opportunity for those impacted with GIST, sarcoma, or any type of cancer to stand together in support and solidarity and raise awareness about GIST (Gastro Intestinal Stromal Tumors)—an often neglected cancer of the gastro-intestinal tract affecting 5,000 new people in the US alone every year. Help us bring attention to this disease and raise awareness by educating your friends and family and joining our call to action! None of our goals can be reached without you. Support our efforts through fundraising, helping us break a world record, participating in advocacy or spreading the word. No matter how you choose to celebrate GIST Awareness Day, you are doing a huge service to the medical field and GISTers around the world.

View video of the GIST Awareness Day Virtual Quilt

August/September NewsletterHelp us break the Guinness World Record from anywhere by pledging a virtual origami boat.

We are overwhelmed and honored by the worldwide efforts put in to make GIST Awareness Day a success. Read our exclusive GIST Awareness Day edition of the Life Raft Group newsletter for full coverage of this amazing day!

About GIST Awareness Day

Last summer the LRG launched its successful Rare 13 campaign to highlight the many faces of GIST and draw attention to the fact that 13 people are diagnosed with GIST every day. The overarching objectives of both the Rare 13 campaign and GIST Awareness Day are to bring enough attention to the disease that having heard of GIST won’t be considered “rare” either. Even with all these efforts, there is still a huge lack of education that exists and more work that needs to be done.

GIST Awareness Day is not only an extension of our Rare 13 campaign, but it also helps raise awareness of sarcomas, of which GIST is the most common type.

About Our Logo

Logos are an important part of any campaign, and play a vital role in making sure the message is being spread. The GIST Awareness Day logo is unique in that it combines all of the LRG’s GIST awareness campaigns into one. The paper boat motif is a nod to our current attempt at breaking the Guinness World Record for the largest display of origami boats, and the number “13” (a reference to the RARE13 campaign- has been integrated into the word ‘awareness’.

GAD Logo 2014

Break the World Record

Raising awareness for a rare cancer is hard work. One fun way we decided to help bring attention to GIST and the work we’re doing is break the Guinness World Record for largest display of origami boats.

We’re already hard at work folding boats and we need your help!

Here’s some information and guidelines to help us break the world record: 

Make the Boats Your Own – Personalize the boats by decorating them, signing your name to them or writing a short message. We want YOU to be a part of the record.

Keep us Posted – Send us pictures of your progress on Facebook and Twitter using #GISTAwarenessDay and #GISTKeepFolding or email us at

Contribute a Patch in our Video Quilt – Film a short video or Vine of your origami skills or any other way you and your friends are working to get the word out about GIST for inclusion in the GIST Awareness Day film that will play at our national events around the country.

Learn how to make an origami boat with these simple instructions. 

Just a few rules:

  • Use only blue, orange and white paper (the Life Raft Group’s colors).
  • Regular 8.5×11” paper works perfectly.
  • Use scrap paper if you have it!

Mail completed boats to us at: The Life Raft Group 155 US Highway 46, Suite 202 Wayne Plaza II Wayne, NJ 07470

Boats will be on display at GIST Awareness Day celebrations throughout the country and used to break the record at our biennial convention November 7-9 in Teaneck, NJ.

For information on how to create your own “folding team” fundraiser, email Mildred Menos at

GIST Awareness Day Events

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Click the pins above to check out how GIST Awareness Day is being celebrated around the world!

GIST Awareness Day event locations:

July 9th:

July 9th – 12th

July 12th:

July 13th:

How to Participate

GIST Awareness Day is for everyone – around the globe. Whether you are part of a GIST local support group in a large city or your family and friends are your GIST support community in the small town where you live, you too can participate.

5 Things You Can Do

1. Help us break a Guinness World Record!

We’ve come up with a fun, unique way to raise awareness for GIST by trying to break the Guinness World Record for largest display of origami boats and we need everyone’s help! Check out our origami instructions for easy directions, ways to personalize your boats and ideas for creating your own origami folding team!

2. Join fundraising efforts to help us find a cure for GIST

Our goal is to raise $200,000 for GIST research on GIST Awareness Day. The more awareness we can build and funds we can raise for GIST, the faster we can find new treatments and a cure. a towards this goal orAre you a business owner? Sponsor or donate to one of our flagship events.

3. Bring friends and family to a GIST Awareness Day event or host one of your own!

Register to attend one of our flagship events in Chicago, Los Angeles or Miami. Spread the word and encourage friends and family to attend as well! Not in one of these cities? You can join our Virtual Event on July 13 on your own or Plan a BBQ, brunch or get together to celebrate with friends and family!

4. Be proactive! Educate government officials, local doctors and medical centers about GIST!

There are a number of different ways to bring the needs of the GIST community to your local government officials. Request that your city and/or state declare July 13th GIST Awareness Day. You can also write letters to local policymakers about the “13 Promises” or bring GIST information to local oncologists and medical centers. You can find templates for all of these letters in our Download Center and you can request GIST materials here.

5. Be a GIST Awareness Maven!

Whether you plan to attend , host your own party, fold boats or make a donation, say it loud & proud by using your social media profiles to let the world know what you are doing to support the GIST community and raise awareness for a rare disease. Use the hashtags #GISTAwarenessDay or #GISTKeepFolding on FacebookTwitterInstagramGoogle+ or Pinterest  to support the cause and enter fun contests! Submitted photos and videos will be used to compose a Virtual Quilt which will be displayed at GIST Awareness Day flagship events and can be seen in our Gallery.

The 13 Promises

GIST awareness is vital to the future well-being of GIST patients. Thousands of people are living with GIST, yet many doctors know little to nothing about it. Many GIST patients are unaware of programs and services that may help them and research is not being done on a large enough scale. All of this because this cancer has been labeled rare and therefore, not as important as other diseases.

We need to raise much greater awareness for this disease right now to influence our future.

But we also need to create a lasting impact on the GIST community by rallying to action right now. To that end, the Life Raft Group launched the“13 Promises” campaign, a national advocacy effort to bring the needs of GIST patients directly to top Washington DC policymakers.

Our 13 Promises to the GIST community

Fund GIST research
Fund sarcoma research
Secure a unique GIST reimbursement code
Encourage compassionate use programs
Ensure public payer coverage for medications
Expand clinical trial enrollment
Fund HCP education on sarcomas
Ensure adequate sick leave policies
Enhance social services for sarcoma patients and families
Protect patient job security
Ensure paid sick leave for caregivers
Encourage speedy regulation processes
Incentivize for continued innovation
You can help!

There are a number of different ways to bring the needs of the GIST community to your local government officials. Request that your city and/or state declare July 13 GIST Awareness Day. You can also write letters to local policymakers about the “13 Promises”. Bring their attention to all of our promises or pick one issue in particular that speaks to you. It’s your choice.

You can find templates for all of these letters in our Download Center.

GIST Awareness Day Press

The Life Raft Group is excited about the inaugural GIST Awareness Day! This event gives us the opportunity to recognize those impacted with GIST, sarcoma, or any type of cancer to stand together in support and solidarity and raise awareness about GIST (Gastro Intestinal Stromal Tumors).

Below is some of the media coverage for GIST Awareness Day:

June 9: Students in Darla Gower’s art classes at Page helped to raise awareness of GIST by helping the Life Raft Group break a Guinness Book World Record. Click here for more information and check out some photos in the gallery.

July 7th: GIST Awareness Day Press Release (Spanish

July 7th: Warning on danger of cancer gastrointestinal stromal

July 7-8: Wayne-based cancer group to hold awareness day – Wayne Record

July 7th: Gastrointestinal Stromal Tumors (GIST): rare type of cancer that affects 2,000 Mexicans a year

On July 7 and 8 LRG staff and members will travel to Washington DC to participate in One Voice Against Cancer’s annual Lobby Day advocating for more funding for cancer research institutions such as the NIH. Read more about OVAC and what we will be lobbying for, as well as our 13 Promises, a list of goals developed for and by the GIST community.

July 8th: The LRG was in DC to raise awareness for GIST on July 8th. Pete, Mildred & Liz met with Christian Cruz from Senator Cory Booker’s office in the morning. Senator Booker signed a Y2015 appropriations letter & and individual letter requesting increased funding for the NIH! Check out the images below and visit our gallery for more photos.



July 9th: The LRG team embarked on media tour, conducting a series of interviews on the radio. Below are the links to listen to the interviews.

  • WOCA-AM/FM, Larry & Robin – ORLANDO (19) LIVE (07.09.14), Featuring Dr. Jonathan Trent (Link here to listen and download)
  • The Bill Martinez Show – SYNDICATED LIVE (07.09.14), Featuring Dr. Jonathan Trent and Mo Collins (Link here to listen and download)
  • WCBC-AM – WASHINGTON DC (8) LIVE (07.09.14), Featuring Dr. Jonathan Trent and Mo Collins (Link here to listen and download)
  • USA Radio Network, Daybreak USA – NATIONAL TAPED (07.10.14), Featuring Dr. Jonathan Trent and Mo Collins (Link here to listen and download)

July 9th: GIST Awareness Day Press Release

Coverage of GIST Awareness Day continues with this press release that calls attention to our awareness campaign and our support for the global GIST community.

July 13th: GIST patients asked to help health systems afford treatments

Download Center

Here you can find all things for GIST Awareness Day! We have provided all of our campaign materials for digital download as well as printing.

For an explanation of GIST Awareness Day, what we’re trying to do, who we’re trying to reach and how to participate, check out our Toolkit, which includes all of the individual campaign materials in the appendix.

You can also download each separately below.

GIST Awareness Day Gallery

Click below to see all the ways people are celebrating GIST Awareness Day.  Don’t forget to tag us on Twitter and Instagram using #GISTAwarenessDay and #GISTKeepFolding to see your photos featured here!  To submit your photo directly email us at   Remember to use the following Hashtags to share your photos with us for GIST Awareness Day – #GISTAwarenessDay and #GISTKeepFolding.

Check out the GIST Awareness Day gallery below:

Photos from our GAD Miami Event:

Photos from our GAD Chicago Event:

Photos from the LA GAD Event:

Here are some photos from our GIST Awareness Day event in Mumbai:

Here are some photos from the Becerras family in Colombia:

Below are some photos from the Hispano Americano School in Colombia:

Here is a cool video of William Glasser making an origami boat blindfolded:

How are you celebrating GIST Awareness Day?