Getting Involved
Donating Fundraising Volunteering Thank You
Donating
The ECD Global Alliance is a non-profit tax exempt organization formed within the US. It supports all those affected by Erdheim-Chester Disease through out the world through awareness, education, support and research. To date all funding has come via private donations. The organization has no paid staff and all work is done by volunteers. However, to keep the organization functioning and to support research, funds are needed. Your donations will allow the organization to promote research into ECD, to provide information dissemination via the website, to continue with hosted chat rooms, etc. Your generosity will help the ECD Global Alliance provide information to those affected by ECD and to advocate for ECD research.
Donations to the ECD Global Alliance can be made online at Razoo by selecting here.
Or, donations to the ECD Global Alliance can be made by mailing checks made payable to “The ECD Global Alliance” to the following address:
The ECD Global Alliance
c/o Ralph Stallard, Treasurer
6375 Thomas Jefferson Hwy
Charlotte Courthouse, Va 23923 USA
Please include your name and address with each donation so a receipt of your donation can be sent.
Donations can be made “In Honor of” or “In Memoriam of” someone.
For donations made “In Honor of” someone, please note this with the donation. Please also include the name of the honoree and an address for the honoree. An announcement letter will be sent announcing the donation that was made in their honor.
If a donation is made “In Memory of” someone, please be sure to note this along with the donation. Please also include the name and address of a family member or loved one of the deceased so a letter can be sent them announcing the donation that was made.
Thank you for your donation.
Fundraising
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. You can email support@erdheim-chester.org. 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.
Ideas for fundraisers are limited only by imagination. Some ways that others have been successful in raising funds are:
· 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 |
| Trifold brochure that provides an overview of ECD. To be printed on the front and back of a single piece of paper | |
|
Business Cards |
Template of business cards that can be printed and provided people who want to donate or remember the ECD Global Alliance website address. |
| Single page overview of ECD. | |
| 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. | |
| Samples of posters that are available for fundraisers and other awareness activities. | |
| A presentation that can be used for talking with groups who want to know more about rare diseases and ECD. | |
| A form that must be signed by anyone identifiable in a picture that is to be used in an ECD Global Alliance product. |
Volunteering
Another way to get help the organization in it mission is to donate your time and talents to help with activities. Some areas where volunteers could help are:
· Work to develop materials to be used for fund raising (e.g. posters, donation request letters, brochures, etc.)
· Search the internet for ECD-knowledgeable doctors and contact information
· Test website releases
· Present information about ECD to local organizations to help raise awareness
· Search for grants for which the ECD Global Alliance might qualify
· Write grant proposals for the ECD Global Alliance
· Help to define how the ECD Global Alliance might fully enter into the social networking arena and provide the necessary updates and monitoring on a regular basis to ensure a professional presence
· Translate website information into other languages, and help to define an approach to keep it up-to-date
· Help with the graphics designs of publications
· Help those who are hosting fundraisers
· Provide professional services to the organization in the form of legal advice, provide proofreading service, etc.
If you are interested in volunteering, please contact the organization. We can always use help to accomplish more.
Thank You
We believe that by working together we can make a difference. We hope you feel the same and will want to join in and help. No matter how you might choose to get involved, we say, “Thank You.” on behalf of all those who are affected by ECD.
Last updated: August 25, 2010