New Year, New Hope – New Year’s Message from the Clinical Director

Posted on January 01, 2016

New Year, New Hope: Director’s Message, The Anti-NMDA Receptor Encephalitis Foundation

January 1, 2016: Ottawa, Ontario, Canada

2015 has been a great year for The Anti-NMDA Receptor Encephalitis Foundation, with much thanks owed to many people. We remain a small group, but we continue to grow in numbers, and to expand our reach as we align with the many people whose lives have been changed by this devastating illness. We will work together to support our allies in the fight for answers, healing and recovery. This is a formidable goal.

Our rank now includes Foundation Ambassadors from 3 countries, including the United States, South Africa and Germany. In the coming year, we are committed to seeing our formal list of Ambassadors and Partner Physicians grow, here at home and abroad, consistent with our goals of advancing care and understanding, concerning anti-NMDA receptor encephalitis, by promoting research, furthering awareness, and supporting those on the front-lines: our patients, our families and our friends who are anti NMDA receptor encephalitis.

We are pleased to celebrate some notable successes from 2015:

  1. The inaugural “Sonia Gramcko Singing for the Cure” benefit concert hosted in March in Ottawa, Ontario was a huge success. It brought together incredible local talent and generous members of the broader community to support, encourage and raise funds for The Foundation. Plans are underway for the 2nd annual event scheduled to take place February 27th 2016.
  2. The “I am anti NMDA receptor encephalitis” bumper sticker campaign continues to spread the message across the world. These can be obtained by making a donation to the Foundation via our website: www.antinmdafoundation.org
  3. Our website, the premier source of accessible information concerning anti-NMDA receptor encephalitis for the general public, underwent a major revamp with an official relaunch in October. The updated website now prominently features patient stories, an updated calendar of events, and links to our Twitter feed and Facebook page. It also provides access to open source scientific articles that can be shared with physicians or family members when questioning the diagnosis, or questioning where to turn next.
  4. The Anti-NMDA Receptor Encephalitis Foundation, Inc. Facebook community continues to grow, with a list of “friends” that includes over 2500 anti NMDA warriors from across the globe. Thanks to our Foundation President, Ms. Nesrin Shaheen, our Facebook page continues to be a beacon of light, a source of encouragement and advice, and a point of contact for those navigating this illness amidst a sea of misinformation.

Supporting individual patients and family members remains at the core of the Foundation’s mission. At our November board meeting, Foundation Directors approved initial expenses to assemble support packages that will be distributed to Canadian patients and families who are admitted to hospital with a diagnosis of anti-NMDA receptor encephalitis. The packages will include essential information and useful tools to help those facing this illness for the first time, and to introduce them to The Foundation. While we continue to work and wait for a cure for this devastating disease, we want to be there to help others learn what it means to be anti NMDA receptor encephalitis. To do this, we continue to rely on your generous support. Money that has been donated has been applied to growing The Foundation over the past 3 years: expanding our base, and funding ventures consistent with our mission. As we move forward in 2016 we look forward to addressing the following specific goals with your support:

  • To increase the reach of The Foundation through establishing our “Partner Physicians Program” in Canada: facilitating open access to an updated and current list of physicians across Canada, with expertise and interest in the evaluation and treatment of patients with anti-NMDA receptor encephalitis.
  • Expanding access to our support packages for newly diagnosed families.
  • Establishing a micro-grant fund that will be used to fund new research specifically focused on improving the outcomes of patients with anti-NMDA receptor encephalitis.
  • Seeing The Foundation join the Neurological Health Charities Canada (http://www.mybrainmatters.ca), in the interest of advancing government advocacy and access to available resources for patients with anti-NMDA receptor encephalitis. We can accomplish more together than we can independently!
  • To continue to move The Foundation towards financial independence. This includes expanding our team of volunteers in order to meet the growing demands and needs of our community.
  • To be a major player in the push to cure anti-NMDA receptor encephalitis and related diseases.

In our mission we remain ever grateful for your support, ever hopeful for our future together, and always anti NMDA receptor encephalitis.

Wishing you a happy, healthy and productive 2016.

Dr. Gregory Day, MD, FRCPC (Neurology)
Clinical Director, The Anti-NMDA Receptor Encephalitis Foundation, Inc. (Canada)