ECD Global Alliance - Erdheim-Chester Disease

Donate

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. 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
P.O. Box 775
DeRidder, LA 70634 USA

Attend Fundraisers

March 24, 2012
The 2nd Annual Gary Brewer Memorial Fun Run, a 5K/1Mile run/walk, is scheduled for Saturday, March 24th, 2012. It will be held at 8 am in DeRidder, Louisiana, at the Beauregard Parish Fair Grounds. All proceeds will benefit the Erdheim-Chester Disease Global Alliance. To participate, please complete and mail in a registration form.

September 25, 2011
A fun run/walk, ECD 5K by the Lake, was held on Sunday, September 25th, 2011, at Tuttle Point Beach, Pymatuning State Park, Espyville, PA at 8:00a.m. All proceeds benefited the Erdheim-Chester Disease Global Alliance in memory of Christine Stallard-Klink.

June 4, 2011
A fundraiser was held at the Pony Espresso Café in Prescott, Arizona. The restaurant donated 10 percent of all sales on Saturday, June 4, from 5-10 p.m. to the Erdheim-Chester Disease Global Alliance. Road One South Blues Band entertained from 7-10 p.m., and local businesses donated raffle prizes.

March 19, 2011
A walk/fun run was held in DeRidder, Louisiana on March 19 to raise awareness and money for ECD research. Over 150 people participated in memory of F. Gary Brewer.

November 20, 2010
A Cornhole tournament and pig roast was held on November 20, 2010 in Pennsylvania. Events included a Cornhole tourney and a pig roast dinner. A DJ played music throughout the day and after dinner. Children participated in a corn toss with prizes. A Chinese auction was also included in the day's activities. It was a fun time for the participants and $2000 was made for the ECD Global Alliance.

November 15, 2010
A Neighborhood Nights Fundraising event was held at the Wildflower Bread Company in Prescott, Arizona.

October 10, 2010
A "10/10/10 - A Day and A Way" fundraiser and awareness campaign was successful in raising over $5500 as of 10/31/2010, with hopes that donations will continue raising that amount. Those who participated where asked to donate $10 and to ask 10 other people to consider donating $10. In this way many people were made aware of Erdheim-Chester Disease and given an opportunity to help in the quest to find more effective and targeted treatments.

September 29, 2010
A 5K Run/ Walk benefit for the ECD Global Alliance took place at Pymatuning State Park on September 29, 2010 in Jamestown, PA. The evening’s events included a ½ Mile Kid Run, a 5K Run, and a 2 Mile Walk. A donation of over $2000 was made through this fundraiser.

July 31, 2010
A Charity Jam was held by All About Care – Care Advantage, and hosted by ACAC Fitness and Wellness Centers in Richmond, VA. Over $2000 in ECD Global Alliance donations were received as a result.

June 5, 2010
Ashley, niece of an ECD patient, raised $1000 for ECD research as her Mitzvah Project, for her Bat Mitzvah.

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. 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
Brochures	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.
Flyers	Single page overview of ECD.
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.
Posters	Samples of posters that are available for fundraisers and other awareness activities.
How-To Guide for Hosting a Fun Run	This guide provides step by step instructions to guide someone who has never hosted a fun run before.
Orphan Disease Presentation with ECD Overview ECD Presentation	Presentations that can be used for talking with groups who want to know more about rare diseases and ECD.
Photo Release Form	A form that must be signed by anyone identifiable in a picture that is to be used in an ECD Global Alliance product.

Be a Study Participant

If you are an ECD patient, you can directly help with research by registering with the organization and making your medical records available to the researchers who need them. Known ECD studies are described on the ECD Studies page, with those requesting patient involvement noted.

Volunteer

Another way to help the organization in its 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: January31, 2012