Donated to Morgellons.org After 2012? You Might Be Owed Money—Here’s Why

A Hidden Scandal in Morgellons Advocacy

Morgellons disease has long been a medical mystery, leaving sufferers desperate for answers and support. The Morgellons Research Foundation (MRF), founded in 2002, offered hope through its website, morgellons.org, where it solicited tax-deductible donations to fund research and awareness.

But in 2012, the MRF shut down—or so it claimed. Shockingly, the website continued to accept donations for over a decade, raising serious concerns about fraud.

If you donated to morgellons.org between 2013 and 2025, you may have been misled about the organization’s status, and you could be entitled to compensation. This article uncovers the troubling history of the MRF, the implications of its post-2012 solicitations, and what you can do to seek justice.

The Enigma of Morgellons Disease

Morgellons disease first gained attention in 2002 when Mary Leitao, a biologist and mother, coined the term to describe a condition she observed in her son: skin lesions accompanied by multicolored fibers emerging from the skin, often paired with sensations of crawling or itching. Leitao named the condition after a 17th-century reference to a similar ailment, and her advocacy led to the creation of the MRF. The organization aimed to support research into what Leitao and thousands of self-reported sufferers believed was a distinct medical condition.

The medical community remains divided on Morgellons disease. Many doctors classify it as delusional parasitosis, a psychiatric condition where patients falsely believe they are infested with parasites. A 2012 CDC study, prompted in part by MRF advocacy, examined 115 patients and found that, among the 96 tested for Lyme disease, only two showed possible exposure to Borrelia burgdorferi—one with a positive EIA and another with a borderline EIA—though the study’s ambiguous phrasing, ‘one case-patient each had a positive or borderline EIA,’ has led to debate about its interpretation, and neither patient had a positive IgG Western blot to confirm Lyme disease, leading the CDC to conclude that Morgellons was likely a delusional disorder with no common infectious cause identified across the cohort.

However, a 2015 study in BMC Dermatology detected Borrelia spirochetes in 24 out of 25 Morgellons patients using more sensitive methods like PCR and culture, suggesting that Morgellons is often associated with Lyme disease and challenging the CDC’s findings. This controversy has left Morgellons sufferers in limbo, seeking answers from a medical establishment that often dismisses their symptoms.

The Rise and Fall of the Morgellons Research Foundation

The MRF quickly became a lifeline for Morgellons patients, claiming to represent over 12,000 families across the U.S. and 15 countries. Operating as a 501(c)(3) nonprofit, the MRF used morgellons.org to solicit donations, offering a PO Box in Guilderland, NY, for checks and promoting online platforms like iGive.com. The organization emphasized transparency, stating that its unpaid board covered their own expenses, ensuring donations funded research and awareness. High-profile efforts, like partnering with the National Hot Rod Association (NHRA) in 2006 to raise awareness at races in Pomona, California, showcased the MRF’s commitment to its cause.

But by 2012, the MRF’s operations came to an end. IRS records, specifically the Form 990-N for tax year 2011 (covering January 1 to December 31, 2011), marked the organization as terminated, with gross receipts under $50,000. Public records confirm no further Form 990 filings since 2012, indicating the MRF has not been an active nonprofit for over a decade. The website announced that remaining funds were donated to Oklahoma State University for Morgellons research, and it would no longer accept donations or registrations. For many in the Morgellons community, this closure was a devastating blow, leaving a void in advocacy and research funding.

A Disturbing Discovery: Post-2012 Donation Solicitation

Despite its termination, morgellons.org has continued to solicit donations, presenting itself as a 501(c)(3) nonprofit and claiming that contributions are tax-deductible. The current contributions page states, “Donations to The Morgellons Research Foundation are tax-deductible to the full extent of the Internal Revenue Code,” and encourages donors to send checks to a PO Box in Guilderland, NY, or contribute via iGive.com, eBates.com, and GoodSearch.com. The page highlights sponsors like the NHRA and claims that funds support research proposals totaling $581,600 from six groups of PhD-level scientists. These claims are alarming, as the MRF has lacked the legal authority to operate as a nonprofit or offer tax deductions since 2012.

The website’s persistence raises red flags. It mentions an unpaid board and minimal operating costs, but without IRS filings, there’s no transparency about how donations were used post-2012. The reference to research proposals suggests ongoing activity, yet there’s no evidence the MRF has the capacity to fund such efforts after its closure. For donors who contributed between 2012 and 2025, this discrepancy suggests they may have been misled into donating to a defunct organization, potentially exposing them to financial harm.

Legal and Ethical Concerns: A Case for Fraud?

The MRF’s post-2012 solicitations raise several issues:

1. Misrepresentation of Nonprofit Status: By claiming 501(c)(3) status and tax-deductibility, morgellons.org may have deceived donors. This could lead to IRS penalties for those who claimed deductions for ineligible contributions.
2. Lack of Accountability: Without Form 990 filings, there’s no public record of how donations were used after 2012. If funds were not directed to research or awareness as promised, donors may have been defrauded.
3. Potential Fraud: If donations were knowingly solicited under false pretenses, this could constitute fraud, a serious legal violation that could entitle donors to compensation.

Could Donors Be Entitled to Compensation?

As of April 2025, there is no public record of a lawsuit or settlement addressing donations to morgellons.org post-2012. However, the situation suggests potential grounds for legal action. If fraudulent solicitation is proven, donors may be entitled to compensation through several avenues:

• Class-Action Lawsuits: A successful lawsuit proving fraud could result in restitution for donors, covering their contributions and any related losses, such as IRS penalties. Class actions are common in cases of widespread consumer deception, allowing multiple donors to seek justice collectively.
• Consumer Protection Claims: Donors can file complaints with state attorneys general or the Federal Trade Commission (FTC), which may investigate deceptive practices and secure refunds. For example, the FTC has previously ordered restitution in cases where nonprofits misrepresented their status.
• Tax-Related Relief: Donors who claimed invalid deductions may face IRS audits. If fraud is proven, they could seek relief from penalties or pursue reimbursement from those responsible for the misrepresentation.

The legal process for pursuing compensation can be complex. A class-action lawsuit typically begins with a plaintiff filing a complaint, followed by a discovery phase to gather evidence, such as website archives showing solicitation post-2012. If the case succeeds, a court may order restitution or a settlement fund for affected donors. Consumer protection claims, meanwhile, often involve less legal burden for individuals, as agencies like the FTC take on the investigation.

The New Morgellons Movement: A Legitimate Non-Profit

The New Morgellons Movement, a nonprofit based in South Carolina, is dedicated to advancing education and awareness about Morgellons disease, a condition often misunderstood by the medical community. While not yet a 501(c)(3) organization, they focus on providing valuable resources for patients and advocates, including a free online class accessible at morgellons.io/learn. This course, along with other educational tools available on their website, morgellons.io, aims to support physicians and patients by offering insights into recognizing and managing Morgellons, while also raising funds for scientific research. The organization, which has a modest following on social media with 202 likes on their Facebook page as of recent updates, emphasizes public awareness and contemporary research to address the challenges faced by those affected by this controversial condition.

The Charles E. Holman Foundation: Another Legitimate Alternative

For Morgellons sufferers and advocates, the MRF’s closure left a significant gap, but the Charles E. Holman Foundation (CEHF) has stepped in as a legitimate alternative. Founded in 2013, the CEHF is a 501(c)(3) nonprofit dedicated to Morgellons research, education, and patient support. Based in Austin, Texas, the foundation hosts annual conferences, funds scientific studies, and maintains an active online presence at thecehf.org. Unlike morgellons.org, the CEHF is a registered and operational nonprofit, offering transparency through regular IRS filings. For those looking to support Morgellons research, the CEHF provides a trustworthy avenue, ensuring donations are used as intended.

Steps for Affected Donors

If you donated to morgellons.org between 2013 and 2025, here are steps to protect your rights:

1. Gather Evidence: Collect records of your donation, such as bank statements, receipts, or confirmation emails. Screenshots of the contributions page can also serve as proof of misrepresentation.
2. File a Complaint: Report the issue to your state’s attorney general or the FTC, providing evidence of your donation and the website’s claims of nonprofit status.
3. Consult a Lawyer: An attorney specializing in consumer protection or nonprofit law can assess whether you have grounds for a lawsuit, either individually or as part of a class action.
4. Review Tax Filings: If you claimed a deduction for your donation, consult a tax professional to determine if you need to amend your return to avoid IRS penalties.

Broader Implications for Nonprofit Oversight

The MRF case highlights the challenges of regulating online donation platforms, especially when a nonprofit shuts down but its website persists. Donors must verify an organization’s status using tools like the IRS’s Exempt Organizations Select Check. For Morgellons sufferers, the MRF’s closure and the subsequent donation concerns add another layer of difficulty to an already challenging journey, as they seek answers about a poorly understood condition.

Fraud Abuse Protection and Reporting Resources

1. Federal Trade Commission (FTC) – Report Fraud
   The FTC provides a platform to report fraud, including scams involving fake charities or misrepresentation by organizations like the MRF. If you sent a check to morgellons.org after 2011, believing it was a legitimate 501(c)(3) nonprofit, you can file a complaint to seek assistance and potentially initiate an investigation.
   • Citation: [Ref web ID: 8]
   • Note: Look for the section on reporting scams, including contact details for wire transfer companies like MoneyGram and Western Union, which also applies to check fraud reporting.
2. IRS – Beware of Fake Charities
   The IRS offers resources to help taxpayers avoid fake charity scams and verify the legitimacy of organizations. You can use the IRS’s Tax Exempt Organization Search tool to confirm that the MRF was no longer a registered 501(c)(3) after 2011, and report fraudulent solicitations that claimed tax-deductibility.
   • Citation: [Ref web ID: 12]
   • Note: The IRS’s notice on fake charities includes tips for reporting fraudulent activities and ensuring donations go to legitimate organizations.
3. FBI – Charity and Disaster Fraud Resources
   The FBI provides guidance on charity fraud, which applies to situations where organizations like the MRF may have misrepresented their status to solicit donations. You can report potential fraud and access tips on how to protect yourself from such scams.
   • Citation: [Ref web ID: 12]
   • Note: Look for the FBI’s resources on charity fraud, which include recommendations for donating to trusted charities and reporting scams.
4. U.S. Postal Inspection Service – Report Mail Fraud
   Since the MRF solicited checks via a PO Box in Guilderland, NY, sending checks through the mail may qualify as mail fraud if the solicitations were fraudulent. The U.S. Postal Inspection Service allows you to report such incidents, especially if you sent a check after 2011.
   • Citation: [Ref web ID: 8]
   • Note: The contact number for the U.S. Postal Inspection Service is provided for reporting fraud involving money orders or checks sent by mail.
5. Consumer Financial Protection Bureau (CFPB) – Elder Fraud Prevention Resources
   If you or someone you know is an older adult who sent a check to morgellons.org, the CFPB offers tools and resources to help prevent and respond to elder financial exploitation. They can provide guidance on establishing a fraud prevention network in your community.
   • Citation: [Ref web ID: 10]
   • Note: The CFPB provides tools for building elder fraud prevention networks and includes links to U.S. Department of Justice elder justice resources.
6. Treasury Office of Inspector General – Fraud Alerts
   The Treasury OIG investigates fraudulent financial schemes, including those misusing federal routing numbers or claiming affiliation with government agencies. While this resource focuses on Treasury-related scams, it provides general fraud protection tips that may apply if the MRF misused financial instruments post-2011.
   • Citation: [Ref web ID: 15]
   • Note: Look for sections on protecting yourself from investment scams and reporting fraudulent schemes involving checks.

Additional Steps and Considerations

• Check Your Tax Filings: If you claimed a tax deduction for a donation to morgellons.org after 2011, consult a tax professional to amend your return, as the MRF was no longer a 501(c)(3) nonprofit, and deductions would be invalid. The IRS’s resources on fake charities can guide you in verifying this. [Ref web ID: 12]
• Contact a Lawyer: Consider consulting a consumer protection or nonprofit law attorney to explore legal action, such as a class-action lawsuit, if fraudulent solicitation is proven. The article mentions this as a potential avenue for compensation.
• Verify with Local Authorities: File a complaint with your state’s attorney general, who can investigate deceptive practices by organizations soliciting donations under false pretenses. This step is recommended in the article but isn’t directly linked to a specific web result.