Fundraising for ECD

Anyone can host a fundraiser to benefit the ECD Global Alliance. We do ask that you contact the organization during the earliest planning stages so that we might help in whatever way we can and ensure all requirements of fundraisers are met.  To help in knowing what to consider when planning a fundraiser, we ask that you look at the Fundraising Policy found the in the table below.  Additional resources can be found on the Resources page.

Ideas for fundraisers are limited only by imagination. Some ways that others have been successful in raising funds are:

  • Year-End personal letter campaign – see resources below
  • Athletic event such as a walk, run, triathlon, bike ride, golf tournament, etc.
  • Motorcycle ride event
  • Wine & cheese gathering
  • Concert or dance
  • Dinner or banquet
  • Personal solicitations from family and friends
  • Proceeds from the sale (or auction) of products such as cards, books, baked goods, handmade items, community donated items, etc.
Resource Description
Year-End Giving Facebook Banner– NEW


Help the ECDGA spread the word about the 2017 Year-End Fundraiser on your media pages!  Use these graphics on your page to remind friends and family how they can support the organization that is serving you in 2018.
ECD Fact Flyer – NEW Generic, single page overview of ECD.
Fundraising Policy List of items that must be considered when doing a fundraiser, along with a form to use to register a fundraiser with the ECD Global Alliance Board of Directors.
How-To Guide for Hosting a Fun Run – NEW This guide provides step by step instructions to guide someone who has never hosted a fun run before.
Photo Release Form A form that must be signed by anyone identifiable in a picture that is to be used in an ECD Global Alliance product.
Year-End Giving Letter Template – NEW During the holiday season or any time of year, we encourage members to reach out to their family, friends, and community to consider the ECDGA for their year-end giving.  Use this template to help write a personal letter to your loved ones.


Fundraiser Examples

The ECDGA is extremely grateful to all members that have dedicated their time, energy and resources to raising awareness of ECD and funds for the organization.  If you would like your fundraiser posted here, please send us a photo and a short summary of your event.  Thank you!


Gabby’s Grill Restaurant, Prescott Valley, AZ Adler Fundraiser
This Arizona restaurant fundraiser was a success, raising over $2,000 while spreading awareness of Erdheim-Chester disease! The Gabby’s Grill restaurant owners, Jim and Kelley Cabral, donated 25 percent of all receipts contributed during this one-night event. The honorary patient and her husband, Leslie and Rich Adler, also found support in their community with the Daily Courier & Tribune and KQNA radio. They were amply supported by their friends and family as well!



Culver FundraiserDine & Donate at Culver’s Restaurant
Culver’s of Highland, Indiana held a fundraiser for ECD on Rare Disease Day 2016.  Interested patrons dined on this day during the designated time. By grabbing an event flyer at the restaurant from ECD patient Ashley, 10% of the cost of their meal went to fund ECD research and patient support through the ECD Global Alliance.  Many locals came out to show their support, increasing awareness of ECD and donating to our mission.

A second Dine & Donate at Culver’s Restaurant fundraiser was held on August 6, 2016.  More funds were donated to the ECDGA and awareness was raised among the community members that joined the ECD patient, Ashley M., for a bite to eat!



Be Brave with HankFrazzini, Hank
Running Vines Winery in Chesterton, IN hosted a fundraiser and awareness event in honor of ECD patient, Hank during Rare Disease Day weekend. They provided live music, food, and ECD awareness shirts and hoodies for purchase.  After advertising in the community and online, they had a terrific turn out.  In addition, the winery donated a percentage of all the wine sales to the ECDGA in Hank’s honor.  Much ECD awareness was raised in addition to donations that were awarded to the ECDGA!


“There are times in all of our lives where we need to be brave – whether for ourselves, for our family, for our friends, or even for a complete stranger. Bravelets™ bracelets are more than just something to wear on your wrist. They are a symbol of hope, strength and courage. They are designed to help you be brave in the toughest of times.” – Bravelets  Visit the “Support Erdheim-Chester Disease” page ( to purchase any jewelry item and Bravelets will donate $10 to the ECD Global Alliance.


Matching Gift DonationMatching Grant Gift
This challenge was presented anonymously by one of our members who pledged to match, dollar for dollar, every donation made from October 27 to December 31, 2015, up to $25K. We are very excited to report that $90K was raised for the ECD community!!  With the $25k matching donation, this raises the total to $115K!!  This allowed the organization to fund 3 ECD research grants in 2015!  Thank you for contributing to this success by sending in your donations and inviting friends and family to help!  By working together we have proved that a small group of dedicated people can make big things happen.  Your efforts also helped raise awareness of ECD in the process – great job!


ECD Hope Park to Park 5kECD Angel of Hope 5K Run

Bob and Phyllis Rodgers hosted the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 during ECD Awareness Week to raise funds and awareness of the rare disease.  They managed to raise awareness across the nation and $5,248 for the ECDGA!



Gurnal’s Courage QuestGurnal's Courage Quest

This fundraiser was held during ECD Awareness Week.  The benefit was hosted by friends and family at a local restaurant.  Tickets to the event, which were $25, included 20 raffle tickets, a 50/50 raffle ticket and there was also a silent auction for donated items.  This event raised over $10,000 for the ECDGA!



UNO’s DoughraiserUNOs doughraiser

Some businesses offer a way for non-profit’s like the ECDGA to benefit from a percentage of their sales for a certain time frame.  Ask around in your local community or find online franchises willing to participate.  It’s a great way for a business to get involved in their community and will help raise awareness of ECD. This event was created by Julie Jones for #GivingTuesday 2015.  She also setup a 50/50 raffle at the door of the pizzeria and delivered lunches to her work which also counted toward UNO’s gift.  Approximately $1,000 was raised and more people learned about ECD!
Click the flyer to learn more.

Last updated: December 5, 2017

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  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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