Current Matching Fundraiser by the ECD Global Alliance

As we reflect on the trials and triumphs of our community members, we can’t help but remember the supporters that come through for those fighting every single day.  Being a donor is not just about supporting a loved one you are fighting for, but also the future of all families faced with Erdheim-Chester Disease.  Your gifts make a big difference in the lives of hundreds of families worldwide.
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With you by our side, we are optimistic about the future for ECD patients like Noah!

Noah Finds Courage & Purpose

Learn more about the families we serve here: Voices of 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 ECDGA Fundraising Policy found in the policy section below.  Additional resources can be found on the resources page.


Community Fundraisers

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.  Get your network interested in fundraising for your support group by sharing this Fundraising Infographic!

Virtual ECD Walk/Run 2021
Thank you to Alexa Lofaro for hosting and the 100+ community members that participated in this virtual walk/run event! This was a volunteer-led event created to raise research funds for the advancement of ECD patient care and treatments. Approximately $25,000 was raised!




Waisted Paint Fundraiser

The ECDGA held a small, local fundraiser in Louisiana. The event was a painting party where 44 attendees selected one of three pictures to paint.  All supplies and painting help was provided for a fee of $30.  There were items donated for a silent auction and door prizes.  The folks who participated indicated they had a good time.  This modest fundraising effort brought in around $1,000 in donations. The ultimate goal was to show ECDGA members how easy it is to do a fundraiser.  We are seeing evidence of this from the questions being asked by some of the ECDGA members. 


Online Fundraiser with Your ECD Story

New York ECD patient, Mohammad Chowdhury, reached out to his network by sharing his story about living with ECD and the work of the ECDGA.  He was able to reach his goal of $5,000 in one month!  He was pleased with the results, “When I decided to let my friends and family know about my ECD diagnosis, I also decided to use the opportunity to ask them to support my fundraising for ECDGA.  I have received very strong responses from the people I contacted, and I am very glad that I used the opportunity for this noble cause.” [Mohammad used to see his fundraising through.  The ECDGA also has personal page setup options on our website.  It’s easy to add your story and get your page published and shared with your friends! Please contact us for help!]


Iris Vagnini

2018 Desktop Calendar Fundraiser

A Florida fundraiser was held in December 2017 by patient Iris Vagnini.  She used her creative hobby of taking exceptional photos in her garden to create a desk calendar to raise funds for the ECDGA.  The advertisement and sales of this product created an opportunity to raise awareness of ECD and earned nearly $2,000 for the organization!




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 Fundraiser
Dine & 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 turnout.  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!


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!!  The $25k matching donation helped raise 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 5k
ECD 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 set up 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: November 3, 2022

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

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