ICYMI – Revocation of The Anti-NMDA Receptor Encephalitis Foundation charitable status

Dear Anti-NMDA/AE family,

In our announcement of 18 November 2023 https://www.antinmdafoundation.org/important-announcement-dissolution-of-the-anti-nmda-receptor-encephalitis-foundation/ we informed you that our Foundation was in the processes of dissolving our charity. The process is now complete, and Canada Revenue Agency (CRA) has informed us that our charitable status has now been officially revoked, effective 2 December 2023. This means that we can no longer permitted to collect donations and provide tax-deductible receipts.

Part of this process involved gifting all our donated funds to another CRA-recognized charity. This has already been done and we are pleased to inform you that our funds have been gifted to the Neurological Sciences Foundation of Canada Inc., the fundraising arm of the Canadian Neurological Sciences Federation (CNSF). This is Canada’s preeminent federation, representing all the branches of the neurological sciences in Canada. One of the branches, the Canadian Neurological Society (CNS) has been managing our Foundation’s Anti-NMDA Receptor Encephalitis Prize annually. The prize is awarded to the most promising young neurologist or psychiatrist for research in the field of autoimmune neurology/neuro-immunology. The candidates and winners of the prize attracted incredibly talented individuals with an interest and passion for this field of neurology. We can’t tell you how proud we are of how this prize has encouraged and empowered some of the brightest minds in the field. The money will ensure that this prize can continue to be awarded annually for approximately 10 years.

It is bittersweet to be saying goodbye, after more than 10 years amongst you.  We felt that we had accomplished many of the goals we had set out to reach.

We are indebted to so many who have supported our audacious project. First and foremost are our followers and funders without whom all we have accomplished would not have been possible.

Thanks are due to the legal team at Blakes, Cassels and Graydon, who accompanied us from start to finish, with invaluable guidance, pro bono.

From our community we have had individuals with firsthand experience as carers of someone afflicted with Anti-NMDA Receptor Encephalitis. They are Susanne Naff in Germany, Pilar Castillo Meier in the USA, Linda Nourse in Toronto, Canada, Kristel Dalbec in Montreal, Canada, Kristy Gevers in Kelowna, Canada, Siobhan Brown in Johannesburg, South Africa, and many others who assisted us on an as needed basis.

We have an extensive collection of patient stories, provided either by caregivers or patients themselves. We are grateful to them for generously sharing their stories, and thereby giving hope to those still struggling.

Our Partner Physician Network was comprised of specialists in Canada and from around the world. We thank them for their collaboration with us and for coming to the aid of so many seeking treatments of a very difficult condition.

We hate to leave you high and dry, so would like to refer you to a few competent and dedicated organisations. They are the Autoimmune Encephalitis Alliance in North Carolina, Encephalitis 411 in Texas, the Encephalitis Society in the UK and last but not least, ENMDAR in France and  serving La Francophonie.

Our website will remain active for the next few months (likely until September 2024), in case there is a need to reach you with important information or if you need to reach us.

Our heartfelt gratitude to all reading this. We wish you a joyful holiday season!