Support the Mission

All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission.

The LGDA depends on patients, their families and friends, and others to host and participate in awareness events and fundraisers to support the work of the LGDA. The core mission of the LGDA is to represent all patients with rare lymphatic anomalies and to focus the attention of clinicians and researchers on developing effective clinical models and research protocols that will improve outcomes for those diagnosed with these conditions.

Read more below to learn more about what the LGDA and its supporters are doing to support the mission and get ideas about how you can, too.


#LGDAwareness Day 2018

The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year ...
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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children's Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center ...
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Star Wars Dark Side Marathon

The LGDA is proud to have Caitlin Havener join us in fighting against GLA and GSD. She will be running a half marathon during the Star Wars Dark Side Marathon at Disney World this April while raising money for the LGDA. In 2016, Caitlin recognized that she was not living ...
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Join the Million Dollar Bike Ride! May 20, 2018

The LGDA is proud to participate in Penn Medicine Orphan Disease Center’s 2018 Million Dollar Bike Ride, to be held on May 20, 2018 in Philadelphia. This year, the LGDA is joining forces with the Lymphatic Malformation Institute (Team LGDA/LMI) with a goal to raise $50,000.  This is a very ...
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Dine To Donate

Fundraising on behalf of the LGDA doesn’t require you to participate in a race or ride, host a dinner auction, put together a golf tournament – it can as simple as passing out a flyer or spreading the word on social media!  There are many restaurants who offer a “dine ...
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Florida 10-year-old Raises $250 for Research

Ten-year-old Hunter Joiner of Florida was diagnosed in 2016 with lymphangiomatosis, also known as generalized lymphatic anomaly (GLA), and he wanted to do something to help everyone with the rare disease. So, he decided to sell t-shirts to raise money for the LGDA. When the fundraiser was over, Hunter had ...
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Want to help but don’t know where to start? Check out the links below for ideas:

View and Print our “Get Involved” Information Sheet

View and Print our International Fundraising Toolkit

Check out a list of awareness/fundraising ideas

Become a Donor

More ways to help
Amazon Smile

When you shop and select the Lymphangiomatosis & Gorham’s Disease Alliance as your preferred charity, Amazon will donate a portion of your eligible purchases to LGDA. You can support the LGDA every time you shop Amazon!

AmazonSmile is a simple and automatic way for you to support the LGDA every time you shop, at no cost to you. When you shop at, you’ll find the exact same low prices, vast selection and convenient shopping experience as, with the added bonus that Amazon will donate a portion of the purchase price to LGDA!

For every Bravelet sold, the LGDA receives a donation. Get one for yourself and anyone you know who is facing a challenge: bracelets, necklaces and earrings, watches and more.

We’d love to see pictures you wearing your Bravelets jewelry! Take a photo of yourself wearing your Bravelets jewelry and send it us at with your name, diagnosis, and location and we will post your photo on our facebook page (