Saturday, August 16, 2008

Before you donate

It has been brought to our attention that our support group member's are receiving emails from Alana Holdsworth/Volding & Brandee Amis new group Chiari Syringomyelia Network which they state is a nonprofit. Apparently she is using our support group member list to solicit our members without our permission or yours. We want to clearly state we are not associated in any way with this group, Chiari Syringomyelia Network or their activities. In addition this group has also chosen to duplicate our Phoenix walk event down to even the details of the same ramada location. With a date of 3 weeks after the official, national walk across America with their funds going to their personal group.

Please do not confuse these two events!!
OFFICIAL WALK FOR CONQUER CHIARI IS SEPTEMBER 20, 2008. Conquer Chiari is a well known, established 501(c)3 whose excellent reputation in the CM/SM community is unquestionable.

We urge you to be cautious when donating funds to any nonprofit. The article below has excellent suggestions.

How to investigate a charity online
Tribune staff report
August 6, 2008
There are many ways to check the viability of a charity before making a contribution or working for one, experts say.

Daniel Borochoff, president of the Chicago-based charity watchdog group American Institute of Philanthropy, runs, which rates charitable organizations based on factors such as how much of their budgets they spend on their programs.
Search for tax forms
To find a charity's tax forms, you can search the database at

The latest available tax form for Deeply Rooted Productions on Guidestar was from 2005 and showed a small deficit for the year.
The tax forms are also available at, which has myriad information on various national foundations.

Nonprofits that make more than $150,000 a year must file an audited tax form with the Illinois attorney general's office.

Borochoff also suggests checking out the New York state attorney general's office's Web site at

Although some of the information on the site focuses on New York-based charities, other parts pertain to nonprofits with a national reach.
Ask for documents
If all else fails, ask the charity or nonprofit itself for its annual report, audits or tax documents. Borochoff said they're required by law to give you copies of their tax forms upon request.

1 comment:

kathymichelle said...

Thanks so much for bringing this to everyone's attention.
This is invaluable information since we all receive donation requests. I am glad you made this clear!

Since I have perused the OTHER website(not this blog) there is NO guarantee where the money will be used. To me, that throws up the proverbial 'red flag'

Conquer Chiari is without a doubt an excellent 501 (3) c

Excellent information! I look forward to our "Walk across America" which will benefit the Chiarian and Syringomyelia community.

Thanks again!