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February 22, 2018

Dear Supporters,

On Saturday, February 17, 2018 our Board of Directors learned that Dysautotnomia International's 501(c)(3) status had been revoked by the IRS for allegedly failing to file our Form 990 tax returns for the 2014, 2015 and 2016 tax years. We think this revocation was done in error, and we are working with our former Treasurer, Ellen Kessler, CPA, and our current accounting firm, Sabel & Oplinger, CPA, PC, to resolve this matter as quickly as possible.

This does not impact our organization's non-for-profit corporation status. We are still able to accept donations and will continue to fund all of our research, physician education, public awareness and patient empowerment programs while this matter is being resolved with the IRS. However, it does mean that donations made from February 12, 2018 until this is resolved with the IRS cannot be taken as a 501(c)(3)charitable deduction on your federal income taxes. This does not impact donations made to Dysautonomia International prior to February 12, 2018, which are eligible for 501(c)(3) charitable deduction. Some donors may be able to claim other types of tax deductions for their donations made after February 12, 2018, such as a marketing or business expense deductions.

When we are able to resolve this matter, which can take 30-180 days according to the IRS, it's possible that the IRS will provide Dysautonomia International with retroactive 501(c)(3) status as they have done for other charities that had their 501(c)(3) status erroneously revoked, so that donations made after February 12, 2018 would be available for a 501(c)(3) charitable deduction as well, but we won't know for sure until the IRS makes its decision.

Unfortunately, we would not be the first charity to have its 501(c)(3) revoked by the IRS in error. An internal report from the IRS's Taxpayer Advocate Service shows that over 9,000 charities had their 501(c)(3) status erroneously revoked by the IRS, and the IRS has done little to prevent this from happening to other charities. You can review IRS Taxpayer Advocate Service report.

Our Board of Directors and accountants are working to get this resolved as quickly as possible, and we will post an update on this website and our Facebook page as soon as we have a decision from the IRS.

We hope our donors will continue to support Dysautonomia International as we work to resolve this matter. To reiterate, as a not-for-profit organization we are still able to accept donations and will continue funding all of our research, physician education, public awareness and patient empowerment programs. We are very excited about the upcoming POTS Research Fund 2018 grant announcements, which we expect to announce in late March/early April. We have received 31 applications from five countries seeking over $2.2M for amazing POTS research! We also hope you will join us at Dysautonomia International's 6th Annual Conference, to be held in Nashville, June 22-24, 2018.

Please do not hesitate to reach out if you have any questions: info@dysautonomiainternational.org.


The Board of Directors

Lauren Stiles, Esq. - President
Jodi Epstein Rhum - Vice President
Christy Jagdfeld, CPA - Treasurer
Jacqueline Rutter Gully - Secretary
Sarah Mendelowitz - Board Member-At-Large

You can review our federal Form 990s here.


Dysautonomia International, Inc. is a non-profit organization based in the United States, but our mission is global. Your donation supports POTS research, training programs for doctors, nurses and other medical professionals, patient empowerment programs, and programs that raise public awareness about POTS and other forms of dysautonomia.

All donors will receive written acknowledgement of their donation. If you have questions about the processing of your donation, please contact fundraising@dysautonomiainternational.org.



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