Careful Who You Associate With

I am writing to you regarding an issue very close to my heart, Chiari Malformation. Chiari is a condition that I was diagnosed with in August 2005 after being misdiagnosed for 18 years. It took me four years in Dallas to find a surgeon who knew anything about the condition; a surgeon who didn’t tell me it was all in my head and to see a psychiatrist. I had brain surgery for Chiari 7 ½ months ago. While my surgery was an overwhelming success, I still have some symptoms that will never go away and some are beginning to return.

There is currently no cure for Chiari (only surgery to slow down the progression of the symptoms).

Another concern that is close to my heart is fighting those whose only goal is to fraudulently profit off of other people’s suffering.

There is a fairly popular non-profit organization that has been turned into the IRS, and the Attorney General’s Office of both Illinois & Delaware for fraud, embezzlement and misuse of non-profit status. That organization is The Chiari Center Foundation.

Today, it came to my attention, that there is a House Resolution 1454 submitted by Congresswoman Halvorson in Illinois that seeks to:

Whereas further research and awareness is greatly needed to properly and appropriately combat this condition; Whereas a turquoise ribbon with a zipper is generally regarded as the symbol for Chiari Malformation Awareness, particularly by the Chiari Malformation advocacy organization, The Chiari Center Foundation;

As someone who suffered for 23 years with Chiari Malformation and I still have some symptoms after surgery… I will NOT support this Resolution and I beg you to remove your sponsorship of it until it is correctly MODIFIED. First of all, The Chiari Center Foundation, in my mind is a fraudulent organization embezzling money from those who are suffering. Secondly, the Chiari awareness ribbon has been Purple for the past two+ decades.

Let me give you a few tidbits of information regarding The Chiari Center Foundation.

Jamie Sopczak (director of The Chiari Center Foundation) called me in November, about 3 weeks before my surgery, to discuss having me help set up a support group in Texas under the umbrella of The Chiari Center Foundation. Even though there is no cure, Jamie told me during our phone conversation, that each state based support group needed a psychiatrist and psychologist on board for those who “thought” they were still having symptoms after surgery.

As an accountant by trade, some of the things she said to me over the phone just started setting off red flags. Red flags that lit a fire under me that 8 months later I have not been able to put out. This fire led me to do some online research about Jamie Sopczak and her organization. My research also includes conversations with hundreds of people that I have connected with on Facebook who all have Chiari.

This is what I have found:

Entity Name CHIARI CONNECTION FOUNDATION File Number 65403625
Status DISSOLVED
Entity Type CORPORATION Type of Corp NOT-FOR-PROFIT
Incorporation Date (Domestic) 03/19/2007 State ILLINOIS
Agent Name JAMIE LYNN SOPCZAK Agent Change Date 03/19/2007
Agent Street Address 16019 90TH AVENUE President Name & Address
Agent City ORLAND HILLS Secretary Name & Address INVOLUNTARY DISSOLUTION 08 08 08
Agent Zip 60487 Duration Date PERPETUAL
Annual Report Filing Date 00/00/0000 For Year 2008

This is the first organization started by Jamie Lynn Sopczak which was INVOLUNTARILY DISSOLVED by the State of Illinois in 2008. A state will not dissolve a non-profit organization involuntarily unless there is some sort of impropriety taking place.

File Number:
4582771 Incorporation Date / Formation Date:
08/01/2008
(mm/dd/yyyy)
Entity Name:
THE CHIARI CENTER FOUNDATION
Entity Kind:
CORPORATION Entity Type:
NON-PROFIT OR RELIGIOUS
Residency:
DOMESTIC State: DE

REGISTERED AGENT INFORMATION

Name: AGENTS AND CORPORATIONS, INC.
Address: 1201 ORANGE STREET, SUITE 600 ONE COMMERCE CENTER
City: WILMINGTON County: NEW CASTLE
State: DE Postal Code: 19801
Phone: (302)575-0873

After the previous organization was dissolved they set up the new (current) organization. To do this, they had to relocate the registration to another state, under another organization’s name. NOT under the name of the person running the organization.

Even though their organization was started in August of 2008, they have no available financial documents and refuse to provide financial statements to anyone. Any and every other non-profit organization I have ever dealt with has had these documents freely available to anyone that asked. Their refusal to provide financial documents sends up a huge red flag. Where are their financial statements from 2008? Just because they were not incorporated until August does not exempt them from filing financials for that year.

When pressed to produce financial documents, all that was posted was a tax-exempt form such as one would use to go shopping for office supplies.

I realize we all have financial difficulties in our lives. Being misdiagnosed for 18 years and being laid off or fired from jobs due to my decreasing health; I have had more than my fair share of financial issues. Unfortunately, it must be noted that in a search of public records, Jamie and her husband have had three lawsuits filed against them for non-payment of credit card bills.

Mismanaging money in ones personal life might be a concern for so many people who have donated to an organization only to receive no help and no answers as to where that money has gone.

The address and phone number listed for The Chiari Center Foundation (Jamie’s home address and phone number) is also the same address listed for the web design company listed on their website, Spiralize, Inc. Suspiciously, nothing on their website actually works except for the DONATE button.

When The Chiari Center Foundation was first set up as a group on Facebook, Jamie had her and her husband listed as “salaried employees.” The people on the Board of Directors for The Chiari Center Foundation are all related to Jamie Sopczak either by marriage or blood.

There have been many times we know money was donated to this organization (via pictures of her holding a big check on Facebook) yet I have been unable to find anyone that has ever been helped by this organization

There have been many, many Chiarians that I have connected with that have been promised help from The Chiari Center Foundation only to be given excuses month after month of why they can’t help yet. They have promised people doctor appointments, expensive medical tests, help with hotel and airfare to see specialists, etc. I have documented records of posts on Facebook not only via links but the emailed notification of such posts as well. Some were told to start their own fundraiser and that they could keep a portion of the proceeds (but the majority would go back to The Chiari Center Foundation). Chiari is a progressive condition and some of these Chiarians saw their symptoms progress while they were waiting for The Chiari Center Foundation to come through with their promises.

The Chiari Center Foundation has also requested (and received) copies of MRIs and other medical records which violates so many areas of the established HIPPA laws that it is not even funny.

The Chiari Center Foundation actually went out and got an agreement with a high interest credit card to have their ribbon adorned on the front. The last thing, anyone who is actually trying to help those in need and suffering from a rare and misunderstood medical condition needs is a high interest credit card. Organizations who enter into these agreements get kickbacks.

There was a baby, Brayden Asher, who was born in Houston, Texas with the worst type of Chiari Malformation, Chiari III. 70% of his brain was outside of his skull. Brayden was not expected to survive birth but when he did, The Chiari Center Foundation took up money and gifts to send to Brayden and his family. After talking with the family, they only received the gifts… they didn’t receive any of the cash. After talking with those that donated, none of them received any sort of donation receipt.

Jamie and The Chiari Center Foundation has threatened to sue any Chiarian (most of her interactions are on Facebook) that does not wholeheartedly support her organization. She also deletes any post on her Facebook wall that questions anything about the organization.

The Chiari Center Foundation has copied many fundraising activities of other organizations. They have held penny drives, sold buttons, pins, and t-shirts, and have an awareness walk planned; some of these activities intentionally stepping on the foot of the other organizations.

Everything has become solely about The Chiari Center Foundation, Jamie Sopczak and her family. How can they make more money off of this “non-profit” organization?

Lastly, I will bring up the petty part of my outright disdain for The Chiari Center Foundation:

http://en.wikipedia.org/wiki/Purple_ribbon

Any normal person would not show up at a Susan B Komen Breast Cancer event wearing Green. The Chiari Ribbon was officially designated and recognized as Purple over two decades ago. There was a grandmother back in the 1990s who’s grandson was diagnosed with Chiari and she made and designed and sold purple ribbons (picture below) to help raise money and awareness.

I have connected with hundreds, nearly 1000 people on Facebook… and none of us are taking kindly to Jamie and The Chiari Center deciding to take it upon themselves to just change the color of the awareness ribbon for Chiari because “they wanted to”.

Our goal, as a Chiari Family, is to raise awareness, educate doctors, and let the world know about Chiari. There are as many people with Chiari as there is with Multiple Sclerosis. Everyone seems to know what MS is, and we are fighting for the same type of awareness for Chiari.

This type of awareness will not ever happen if we allow a Fraudulent, Embezzling Criminal and her fake organization take over with a ribbon that does not represent us.

The Turquoise ribbon with a Zipper ONLY represents The Chiari Center Foundation… it does not represent Chiarians or Chiari.

The ribbon used by The Chiari Center Foundation is only a billboard for the unethical financial practices of an organization that needs to be shut down.

Please, I beg you. Please withdraw your support and sponsorship of House Resolution 1454 until it has been modified/corrected, showing that the ribbon is PURPLE and that any mention of The Chiari Center Foundation has been removed.

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