Hope is our Strongest Weapon
Posted on September 25, 2017
Anti-NMDA family of Caregivers, Patients and Supporters:
I first heard the phrase “Hope is our strongest weapon” in 2009 from a Greek mother whose daughter had been diagnosed with anti-NMDA receptor encephalitis. It resonated with me, as my own hope was dashed again and again, with every failed treatment and relapse. Yet, somehow, that hope was renewed every time.
Since 2009 I have served our anti-NMDA community, first as an administrator on two FB support groups, and then in 2012 as a founding member and president of the Anti-NMDA Receptor Encephalitis Foundation. Before my years of service, I was first and foremost my daughter’s caregiver. She was stricken in 2008 and had four relapses between 2008 and 2012. As we battled against anti-NMDA it became crystal clear to me that more awareness and research was needed. Our Foundation was created for this purpose, with the complimentary goals of providing ide information and support to patients, families, care-givers and healthcare providers and as a way to disseminate information to professionals and lay-people. Over the years, I have seen many changes in our community, which now numbers in the thousands! I have seen many survivors recover and return to the normal activities of daily life. I have seen some get married, and several have children. Sadly, however, some of our closest friends have been left with severe sequelae, while others have lost their long and brave battles against this harrowing enemy.
We now know that anti-NMDA receptor encephalitis is the most common of all the known autoimmune encephalitides. As a result, our need for additional funding has grown. Income is up slightly from last year but expenses have also increased as we work to reach more and more people.
Donations are always down over the summer months, and with September here I realize that I now need to put on my fundraiser cap. We remain an entirely volunteer-driven organization, supported 100% by your generous donations. It is through these donations that we maintain our hope of making this Foundation—the only one in the world dedicated to anti-NMDA receptor encephalitis—solid, strong and capable of reaching the many patients and families in need. Please remember us in your charitable giving here: http://www.antinmdafoundation.org/donate/
Although, headway has been made on the research front, much more still remains to be done. In the meantime, HOPE is still our strongest weapon. Thank you for your support and for staying ANTI NMDA!