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Funding Guide

We would like everyone to have the opportunity to attend a CHARGE Syndrome Foundation Conference and are aware of concerns about being able to afford the full cost of attending the conference. In response to these concerns, the Board has taken to the Internet to seek sources of funding that you might be able to tap to help you fund your trip. We have identified a number of organizations that may offer grants to individuals and to families of children with developmental disabilities.

Getting Started

Our primary source of information was Wonder Baby.org, a website published with the support of the Perkins School for the Blind (http://www.wonderbaby.org/articles/ipad-funding-special-needs and http://www.wonderbaby.org/articles/conference-fundraising#proposal).

The first link provides some wonderful information on ways to get money to purchase specific items such as iPads from insurance companies, schools, local charities, fundraisers, and grant applications to specified list of organizations.

The second link gives more great hints on how to go about getting a sponsor/advocate and writing a successful proposal letter to request financial aid for attending a conference.

Grant Letters

Using this article as a guide, we developed a  sample letter specifically focusing on obtaining funding to attend the 2023 CHARGE conference.  We hope that you will find it a good starting place for your own letter.

Sample Grant Letter

Calculating Expenses

We also created an  Excel spreadsheet that you can download and use to calculate your family’s travel and conference costs. Your detailed, categorized conference related expenses can then be attached to your funding applications and letters.

Download Expense Spreadsheet

Funding Agencies

Using the lists of organizations found in these two Wonder Baby articles, as well as in a few other locations, we exercised our online search engines to learn more about them. We researched organizations that offer grants to individuals and families. Some have significant geographic limitations while others have national and international service coverage. Where possible, we provide a brief description of these organizations and how to contact them. The first section of this list shows organizations that serve the entire US; the organizations listed in the second section serve only the noted geographic areas.

Download List

Continue with plans for fundraisers and feeding piggy banks to save money for the conference but don’t overlook the possibility of getting one or more grants to help cover those expenses. Even if a letter you send doesn’t result in financial aid for the conference, it has served another purpose: educating people about CHARGE Syndrome and how it affects an individual and their family!

teal line

Now it is your turn.

Get organized to apply for one or more grants to attend the conference:

  1. Start NOW!
  2. Carefully read both the Wonder Baby Newsletter articles referenced above
  3. Print a copy of the second one, Beyond Bake Sales: How to Raise Money So You Can Attend a Family Conference, to use as a quick reference.
  4. Find a sponsor/advocate for your family, as recommended.
  5. Do financial homework. Go to Hotwire, Expedia, Orbitz and similar sources to get a sound estimate of your airfare costs. Will an airport shuttle or taxi meet your needs or do you have a specific need to rent a vehicle? If so use these same websites to get estimates for the cost of the rental vehicle and factor this into your transportation costs. Are you a lifetime member of the Foundation? If so, this will reduce conference fees by 10%. Click here to download the Excel worksheet to calculate your family’s cost to attend the conference. You will need to be able to provide this documentation with your grant requests.
  6. Click here to download the list of granting agencies and read it carefully
  7. Identify the organizations that you want to contact.
  8. Go to their websites and read them carefully. Is there a formal application process? Do you need to submit proof of financial need? Do they require letters of reference from professionals to substantiate your need for conference attendance?
  9. Assemble the required supporting documentation and have it ready when each agency opens its application period or when you make contact with your local organizations. Do NOT wait until the application period starts to begin this project.
  10. Mark your calendar with the dates on which you can make application and carefully follow their instructions when you assemble your package for submission. Don’t get your request rejected on a technical or clerical oversight like missing a deadline or not including requested information!
  11. Click here to download the sample grant proposal letter. Use it as a starting point to create the one you will use for your family’s need.
  12. Send this letter to as many source agencies as are available in your city, state, and region. This might result in partial funding from multiple agencies that can add up to significant funding of your costs.

Good luck with your grant applications! See you in Orlando in 2023!