The following contains a sensitive request, and is a copy of a letter sent to medical professionals that are part of AEA’s Clinicians Network. We, at AEA, thought that those who have connected with us over the years would want to see this extraordinary request. Please know that we treat such a call for samples with the greatest respect.
“Good evening members of the Autoimmune Encephalitis Alliance Clinicians Network,
Eric Lancaster, MD, PhD, assistant professor of neurology at the University of Pennsylvania’s Perelman School of Medicine, contacted AEA about using our network to potentially find samples of brain tissue of those affected by AE. He and colleagues have been studying tissue from a woman who died of anti-NMDAR encephalitis. The family made the donation in hopes that something positive would come out of their tragedy. This investigation has been very productive and raised some interesting ideas about what causes the disease and potential novel treatments. It has taken Dr. Lancaster and his co-investigators months to develop the techniques and methods, but a huge limiting factor in the work is the need to study other samples and see if their work generalizes.
If you know of samples that have been donated please contact AEA Executive Director, John Spencer ([email protected] ), or Dr. Lancaster directly ([email protected] ). Dr. Lancaster and his colleagues believe that they are in a good position to use the donations to find out something useful to other patients in the future. For the moment they focused on anti-NMDAR encephalitis. They would probably be able to also study other well-described antibody conditions (e.g. AMPAR, GABA-B, GABA-A, LGI1), but these are secondary to their current focus. Ideally, the sample would have CSF and/or sera with which to confirm diagnosis, but they can probably accept reports from a reputable lab if that is not possible. Unfortunately, seronegative samples cannot be studied at this time, but they will still collect them as in the future those might be useful as well. If patients had a brain biopsy as part of their diagnostic process, this could also potentially be put to good use too. They are also willing to collect frozen tissue from institutions that may not yet know how to examine these samples.
We understand the sensitive nature of this request. It is AEA’s hope that by facilitating Dr. Lancaster’s request, that we will all benefit.
Thank you for your work on autoimmune encephalitis, and your dedication to aiding those suffering from this disease.
The Autoimmune Encephalitis Alliance is a 501(c)(3) non-profit organization that promotes collaboration and community to improve care and find a cure so that no one faces autoimmune encephalitis alone. Your donations alone make this work possible as we aid people of all ages who are affected by this disease. All of our services are free of charge. We are grateful for your support (Donate now). If you would like to receive periodic emails/newsletters from AEA please visit our contact page.
Any communication from Autoimmune Encephalitis Alliance, Inc. is intended for informational and educational purposes only and in no way should be taken to be the provision or practice of medical, nursing or professional health-care advice or services. The information should not be considered complete or exhaustive and should not be used in place of a visit, call, consultation or advice of your physician or other health-care provider. You should not use the information in this or any Autoimmune Encephalitis Alliance, Inc. communication to diagnose or treat autoimmune encephalitis or any other disorder without first consulting with your physician or healthcare provider. Any referral to physicians is provided as a courtesy only.”