UA-85741662-2

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis August 2019 2nd edition

In this Issue~

  • Most Popular Video of the Month: Nervous system song
  • Most Popular Podcast of the Month: New Antibody Phosphodiesterase 10A-IgG identified 
  • Call to Action: Worldwide Plasma Donation Drive due to shortage
  • STUDY NEEDS YOUR PARTICIPATION: Understsanding Consequences of Encephalitis
  • Most Shared Post: Voice of an Advocate
  • Clinician’s Corner: Human gestational NMDAR autoantibodies impair neonatal murine brain function
  • Open Access:  Mayo clinic has identified a new antibody~ Scientists discover autoimmune disease associated with testicular cancer

Most Popular Video of the Month~

Nervous System Song

Learning through music and song is an easy way to process new information and increase your knowledge. We are using a different part of our brain when we sing – that is why as children our teachers taught us the alphabet through song.

Here, IAES is asking you to Crank up your volume and rock out to the Nervous System Song people:) Have FUN learning about neurons and the nervous system. 
You will find other songs on the IAES website that will help you learn.

 

 

Most Liked and Shared IAES Post

Take our hands. You are no longer alone. You are IAES STRONG!

 

In the last edition of THE HERD, we brought you the news that a new novel antibody (biomarker) had been discovered in paraneoplastic AE.

In the first segment of this podcast, Dr. Stacey Clardy (on our Doctor’s list) talks with Dr. Anastasia Zekeridou about her paper on Phosphodiesterase 10A-IgG, a novel biomarker of paraneoplastic neurological autoimmunity.

We are currently experiencing a plasma shortage in the U.S.A. and Worldwide. There simply isn’t enough plasma available to keep up with demand. This affects all patients with Autoimmune Encephalitis who receive IVIG as a life saving treatment, as well as other patients who require this treatment. 

The need for plasma and plasma-derived products grows each year, but the complex nature of Ig [infusion] products … means that it takes time to increase the supply. It’s not as simple as making a more pill. 

Manufacturing IVIG is complex and lengthy. It takes around six months from the time of the plasma donation to the delivery of the treatment to a patient. Each infusion takes a huge amount of plasma to treat an AE patient. ONE patient with ONE treatment of IVIG  takes over 1,000 plasma donations! 

The Solution: Donate plasma and have your friends, co-works, relatives donate as well. 

IAES is encouraging everyone to get involved. Head a plasma drive or just take the time to donate yourself. Become a regular plasma donor if possible. 

Go on the web and search for a plasma donation center near you.  Often plasma donations provide a monetary benefit. 

Until there is more plasma, AE patients may have to wait for an infusion which can result in a relapse of their disease or long hospital stay. Do a ‘simple act of kindness’ and donate today. 

STUDY NEEDS YOUR PARTICIPATION: UNDERSTANDING CONSEQUENCES OF ENCEPHALITIS

 

 

The survey will take approximately 15 minutes to complete.
This study is being led by Dr. Venkatesan at Johns Hopkins University in collaboration with Dr. Yeshokumar at the Icahn School of Medicine at Mount Sinai.
We would like to invite all IAES encephalitis patients to participate in a study which surveys for symptoms following encephalitis/AE.
While Autoimmune encephalitis may result in the development of a number of persistent symptoms, these have not been well studied. A better understanding of the persistent symptoms in people affected by Autoimmune encephalitis may lead to the development of targeted therapeutic and rehabilitation measures to enhance function and quality of life.
This study will include patients between 18 – 84 years of age who are diagnosed with any form of encephalitis.

Clinician’s Corner

Human gestational NMDAR autoantibodies impair neonatal murine brain function

INTERPRETATION: The data collectively support a model in which asymptomatic mothers can harbor low-level pathogenic human NR1 AB that are diaplacentally transferred causing neurotoxic effects on neonatal development. Thus, AB-mediated network changes may represent a – potentially treatable – neurodevelopmental congenital brain disorder contributing to lifelong neuropsychiatric morbidity in affected children.

Scientists discover autoimmune disease associated with testicular cancer

“Mayo Clinic’s Neuroimmunology Laboratory has a long history of biomarker discovery, and this continues that tradition, bringing together Mayo Clinic’s biobank, the largest repository of biospecimens in the world, with advanced technologies being devised and implemented at UCSF and CZ Biohub,” says Sean Pittock, M.D., a Mayo Clinic neurologist and corresponding author of the study. “By working together, our organizations have the potential to make biomarker discoveries much more rapidly.”

Using this biomarker signature, 37 patients now have been diagnosed with this paraneoplastic disease, and the scientists believe many more will be diagnosed.

“This study is the tip of the iceberg,” Dr. DeRisi says. “We know there are more paraneoplastic autoimmune diseases waiting to be discovered and more people to help.”

 

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

 

Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Website Security Test
Translate »