HDSA Reports Data Breach

Consistent with the Society’s ongoing commitment to transparency and communication, HDSA is reporting that it was recently the target of a crime.  In early May, unknown individual(s) gained unauthorized access to the webmail account of a Huntington’s Disease Society of America employee in an attempt to steal significant funds from the HDSA bank account. 

Due to the diligence of our staff and the strong internal controls that were already in place, we detected this criminal activity before dollars were stolen and immediately commenced an investigation. We reported this incident to the New York Police Department and the Federal Bureau of Investigation.  We also have engaged third-party forensic experts and privacy and data security legal counsel to assist in the investigation of, and response to, this incident. 

In the course of the ongoing investigations, we learned that some personal information for staff, vendors and some donors, such as social security numbers, driver’s license numbers, and bank account information, was exposed.  We do not believe this information was the target of the hack, but we contacted these individuals to advise them of this incident and to proactively offer them free identity monitoring and identity recovery services.  

Please know that we take this matter and the security of personal information very seriously.  We have strict policies regarding the storage of financial information and confidentiality, and we continue to work with the HDSA Board of Trustees to review our IT policies and procedures, as well as those of our vendors, to ensure that we have the strongest systems in place to minimize risks. Additionally, we continue to work with the authorities and our legal team to pursue the offenders. 

As always, if you have any questions regarding HDSA, please contact us at 212-242-1968 or via email at hdsainfo@hdsa.org  Questions relating to this incident may also be directed to a confidential call center we’ve established, at (877) 215 – 9747.  Please provide reference number 4022070113 when calling.

Thank you again for your ongoing support as we work to accomplish HDSA’s mission.