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Host Fundraisers

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.

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 belowAthletic events such as a walk, run, triathlon, bike ride, golf tournament, etc.Motorcycle ride event
Wine & cheese gatheringA concert, dance, or entertainment, etc.Dinner or banquet
Personal solicitations from family and friendsProceeds from the sale of products such as cards, books, baked goods, handmade items, community donated items, etc.Silent or live auctions
Resources
Resource linkResources description
How-To Guide for Hosting a Fun RunThis 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 FlyerThis 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 TemplateDuring 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 TeamDon’t do it alone! Lighten your load by recruiting close friends and family to take a role in the planning.
Facebook Fundraising 101Learn 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 EventThese basic steps to fundraising may help you see the big picture and focus on what a successful fundraiser may involve.
How to Ask for MoneyLet’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.
Fundly – Fundraising for small groupsThis 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 PinsPinterest 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!

ECD Awareness Week 2025 is September 8–14

ECD Awareness Week 2025 is September 8–14

ECD Awareness Week is September 8–14, 2025, and we need YOU to help raise awareness and show the world what it ...
UNO’s Doughraiser

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 ...
Gurnal’s Courage Quest

Gurnal’s Courage Quest

This fundraiser was held during ECD Awareness Week. The benefit was hosted by friends and family at a local ...
ECD Angel of Hope 5K Run

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 ...
Matching Gift Donation

Matching Gift Donation

This challenge was presented anonymously by one of our members who pledged to match, dollar for dollar, every ...
Be Brave with Hank

Be Brave with Hank

Running Vines Winery in Chesterton, IN hosted a fundraiser and awareness event in honor of ECD patient, Hank ...
Dine & Donate at Culver’s Restaurant

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 ...
Gabby’s Grill Restaurant, Prescott Valley, AZ

Gabby’s Grill Restaurant, Prescott Valley, AZ

This Arizona restaurant fundraiser was a success, raising over $2,000 while spreading awareness of Erdheim-Chester ...
2018 Desktop Calendar Fundraiser

2018 Desktop Calendar Fundraiser

A Florida fundraiser was held in December 2017 by patient Iris Vagnini. She used her creative hobby of taking ...
Online Fundraiser with Your ECD Story

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 ...
Waisted Paint Fundraiser

Waisted Paint Fundraiser

The ECDGA held a small, local fundraiser in Louisiana. The event was a painting party where 44 attendees selected ...
Virtual ECD Walk/Run 2021

Virtual ECD Walk/Run 2021

Thank you to Alexa Lofaro for hosting and the 100+ community members that participated in this virtual walk/run ...
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