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.

FUNdraising Ideas

Ideas for fundraisers are limited only by imagination. Below are some creative ways to raise funds for your community. See the resource menu below for helpful website sources to get you started!

Year-End personal letter campaign – see resources below	Athletic events such as a walk, run, triathlon, bike ride, golf tournament, etc.	Motorcycle ride event
Wine & cheese gathering	A concert, dance, or entertainment, etc.	Dinner or banquet
Personal solicitations from family and friends	Proceeds from the sale of products such as cards, books, baked goods, handmade items, community donated items, etc.	Silent or live auctions

Resources

Resource link	Resources description
How-To Guide for Hosting a Fun Run	This guide was created by the ECDGA to provide step-by-step instructions to guide someone who has never hosted a fun run before. However, it is adaptable for any type of fundraiser planning.
General Fact Flyer	This overview of ECD can help provide the facts about the disease to build your campaign or to pass along for awareness.
Year-End Giving Letter Template	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 or to give you ideas to start your own.
How to Build a Winning Fundraising Team	Don’t do it alone! Lighten your load by recruiting close friends and family to take a role in the planning.
Facebook Fundraising 101	Learn how to navigate Facebook for fundraising. Social pages can be a great tool for getting the message out about your cause.
10 Steps to a Successful Fundraising Event	These basic steps to fundraising may help you see the big picture and focus on what a successful fundraiser may involve.
How to Ask for Money	Let’s face it, no one likes to ask for money. But this is often all it takes! When you have passion for your cause, it will show to your contributors.
Templates for your Event	Using online templates helps reduce the time spent organizing documents necessary to promote and execute your event.
Fundly – Fundraising for small groups	This awesome website provides many fundraising ideas, which are all categorized by Top Picks, Group Type, etc. It also provides success stories, the ability to launch a fundraiser with a step-by-step guide, and tons of other resources.
Pinterest – Fundraising Pins	Pinterest rocks for fundraising ideas. Anything from huge events to easy quick fundraisers with little to no effort!

ECDGA Fundraising Policies & Forms

Getting started on the planning for your event? Please let us know the details by submitting our Fundraising Policy form below. This will help us learn about your activity to help you advertise and list your event in our Community Fundraiser section. If you need more assistance with your event from our team, please send your inquiry and we will do our best to assist you. We want you to have a successful fundraising experience!

ECDGA 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.

Photo Release Form
A form that must be signed by anyone identifiable in a picture to be used in an ECD Global Alliance product, (i.e., website, social media, printed news, etc.). Please submit this with photos from your event that you would like us to use for promotion and inspiring community news.

Logo Usage
The ECDGA does not currently have a copyright of our logo to prevent limitations on awareness activities. However, we ask that you use our logo responsibly and professionally to uphold the reputation of our community. Please contact us for the logo file formats needed, we are happy to share!

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 gofundme.com 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!]

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
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!

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 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 Donation
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 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 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 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.