Encephalitis Global, Inc.

Rating: 4.97 stars   34 reviews

Address:

Encephalitis Global, Inc. c/o 18 North Broadway #404 Tarrytown NY 10591 USA

Mission:

Encephalitis Global Inc. strives to foster communication, support and fellowship among survivors of encephalitis and their caregivers, family and friends and to promote treatments for, prevention of and research and education about encephalitis.

Geographic areas served:

International

2015 Top-Rated Nonprofit
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604 980 2236
http://www.encephalitisglobal.org

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Reviews for Encephalitis Global, Inc.

Rating: 5 stars  

2 people found this review helpful

My mother had herpes simplex encephalitis a year ago. She lives in Poland and this is a rare disease. Therefore, it was difficult for me to find much of information about recovery in Polish language. Doctors didn't give as much hope or any instruction what to do next after discharge from a hospital. Thankfully, I found Encephalitis Global community online. They provided me with useful information about the encephalitis disease and gave me much needed hope that life after E is possible. Thank you, Encephalitis Global !

 
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Rating: 5 stars  

5 people found this review helpful

I suffered encephalitis and during my recovery, it was bewildering, frustrating and lonely to try to understand what my path forward was. Unlike external TBIs where there may be a gaping head wound, encephalitis is a "hidden" brain injury. My medical team kept assuring me that things would get better and all would be fine. It is such a rare condition that I am not sure that many neurologists really have a sense of how devastating it can be and the far-reaching effects of it. I felt so alone and "unheard" by my medical team so it was a godsend to stumble across Encephalitis Global and find a community of people who knew what I was going through and could offer tips and support.

 
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Rating: 5 stars  

5 people found this review helpful

They provided a much needed source of encouragement,inspiration,information and the biggest Heart around compassionately reaching out to our utmost timely needs. At times,the prayer-answered Lighthouse for our Darkest Days.
THANK YOU Encephalitis Global.

 
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Rating: 5 stars  

7 people found this review helpful

I survived the initial impact of E in the fall of 2012.
Upon discharge from the hospital, I was expected to resume all aspects of my old life with everyone saying "your cured now the illness has gone!" and was expected to be the old me again....like having a bout of flu and being administered the required dose of hot broth, some bed rest and remedies.
Although incapacitated and direly confused I began researching for information of what the professionals had later registered as my ailment.
I came upon Encephalitis Global and it has been my saving grace.
It's nice to know we are never alone and we have help and advice from others who have experienced the variance of highs and lows recovering from the many facets of damage done by this rare unexplained illness.
Thank you all and especially Wendy for being the shining light in our road of darkness.

 
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Rating: 5 stars  

8 people found this review helpful

Encephalitis Global was there for me in my darkest hour. They were there encouraging me as I recovered and the bonds that I have formed with other survivors are life long.

 
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Rating: 5 stars  

8 people found this review helpful

I got herpessimplex encephilitis in 2011, for the first year i didn';t much go on the computer but once i was up to it i discovered this global network and it has been a life line on so many occasions. words can't express how much i value the kinship i have felt with all the wonderful people who interact on this site. i have made such wonderful connections with people all around the world, people who really understand how it is to deal with the after effects of encephilitis, the highs , the lows and everything in between. Whenever i have something i am struggling with i can put it out there to the group and get helpful replies from others who have been there. To know we are not alone with this is so valuable, especially as many people out in the world have no idea about how it is to live with brain injury.
It also is very fulfilling to know that i to can help others through this network which helps me to feel i have something to offer even tho i have lost my career and life as i once knew it. slowly but surely i am building a new life and the support i have got from E global plays a huge role in that. I can't imagine how life would have been the past few years without this network.

 
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Rating: 5 stars  

7 people found this review helpful

As a survivor of encephalitis I value so much the friendship, support, information and encouragement that Encephalitis Global provided to me especially during my early stages of recovery. As a volunteer run organisation Encephalitis Global is up there with the best of them!! And even though I'm on the other side of the world I never feel alone in my journey with encephalitis.

 
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Rating: 5 stars  

8 people found this review helpful

I have rated Encephalitis Global twice before. I am happy to say that I continue to be helped by this wonderful organization of caring individuals from around the world. Without these interactions, I would not have come as far as I have: I have grown tremendously. Thank you, members!

 
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1 previous review
Rating: 5 stars  

10 people found this review helpful

I continue to be helped by all of my interactions with the wonderful members of the Encephalitis Global community. Over the last year, I have taken enormous strides that would never have occurred without this group. Every week I learn something new that helps me with my own recovery, and I am encouraged to help others in this group. Kudos to Ingrid and Wendy for starting and running such a wonderful organization, and kudos for all of the participants for forming such a fantastic community.

I've personally experienced the results of this organization in...

Improving my everyday life, helping me to move forward in my recovery, and learning how to help others in their own recovery.

If I had to make changes to this organization, I would...

Do nothing.

 
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1 previous review
Rating: 5 stars  

8 people found this review helpful

Encephalitis Global has filled a crucial function in my life, even though I do not know any of the other members personally. This group has been a vital part of my recovery from encephalitis. Early in my recovery, I felt that this was one of the only places I could turn. Hearing the thoughts of a group of people who have been through what I have been through, as well as those that have cared for us, is incredibly important. I need and am attached to my family and friends, but they simply cannot understand what it is like to be inside our heads. I know we are all different, but we all share the trauma and recovery that comes with encephalitis. In that, we are our own community. This community is the one place where those of us living post-encephalitis lives can find others who know EXACTLY how we feel. Caregivers try their best, physicians are knowledgable, but only those of us who are actually living with the afterglow of a traumatic brain injury are able to truly know what it is like. In a bizarre post-encephalitic way, we are like our own family.

I've personally experienced the results of this organization in...

the way I deal with my everyday life, including with my family and fellow workers.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

 
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Rating: 5 stars  

6 people found this review helpful

I was born and raised in New Orleans, Louisiana except when I lived in Athens, Georgia for 7 1/2 years and for 5 1/2 years, I worked for Bryndis Roberts, Vice President for Legal Affairs. She had two girls, Jennifer and Jessica, who went to grammar school. When we had to work late, I would pick her girls up from their after school program and take them to their Girl Scout meetings and other activities. At work, I was responsible for providing information requested during lawsuits against the University of Georgia and for providing records to those that request access under Open Records Law.

When I moved back to New Orleans, I decided to buy a double home in July 1995. I rented out one side and I lived on the other. It was a long old shotgun home with only one closet on each side. It was a great home that was destroyed by Hurricane Katrina because my entire neighborhood was under water for three months. When I was finally able to see it, the majority of my belongings were destroyed . . . All clothes, photos, books, bed, sofa, computer, CD's, etc. were gone. I had to hold my breath when I walked in because the smell would make me sick. When I went in, I was only able to grab my ticket to see Paul McCartney in Las Vegas (in November) that, thankfully, was not destroyed on the top of my computer stand, and the dishes that were stored up high in the kitchen. Everything else in my home was lost.

Bryndis had a great influence in my working life because I had grown into a hard-working Paralegal. For instance, I had worked for Allan Kanner and Associates for 5 years and traveled to New Jersey to find the documents to assist in our litigation. I was responsible for handling all communications for those that signed up and received funds from our completion of the case1 . I then moved on to work in other Law Firms, and I was working for the Law Office of Barrasso Usdin Kupperman Freeman and Sarver when Hurricane Katrina destroyed my home and for 2 years, I lived in River Ridge, LA and I drove to work in downtown New Orleans. My new home is a 3 bedroom/2 bathroom home that is raised up with storage and parking for vehicle downstairs. However, when we had to leave town because Hurricane Gustav was coming, I drove to Atlanta, Georgia with my 4 dogs to stay with my friend and former boss, Bryndis. Those were the good old days.

My hard working days as a Paralegal were destroyed in 2009, when I was diagnosed with Herpes Simpler Encephalitis and 3 cm of my brain was removed. "Encephalitis is an inflammation of the brain often caused by viral infection. Patients require urgent care due to rapid development of fever, headache, seizures, and neurological issues. The rare disease can be fatal.” (Wendy Station and Ingrid Guerci. "I’m Not the Me I Remember: Fighting Encephalitis." http://www.inspire.com/.)2

I am thankful that my Mom, Helen Locantro, and two sisters, Lynne and Donna, helped me throughout my serious illness and recovery. The worst part of that illness is that I lost memory of my previous life. I was depressed and did not do well in school. Then my body literally shut down again. I couldn't walk or go to the bathroom; It was terrible. I also kept having seizures and had to go to the hospital. Finally, in April 2013, I had brain surgery and they fixed what was broken! I’m back to thinking appropriately!

I have been attending speech therapy at LSUHSC Speech-Language Pathology clinic for many years. My class is run by Scott S. Rubin, Ph.D. I have regained some knowledge that was lost and still go to school to relearn many things that were lost. My teacher last semester was able to help me relearn the streets I travel on in Uptown New Orleans. I was so happy when while I was on Jena Street on my way back from Rouse's grocery store, a car stopped and asked for directions to get to Touro Hospital. I smiled and told them directions and they both thanked me and drove off. I was happy because I was FINALLY able to help others because of what LSUHSC Speech-Language Pathology has done for me!!!

Unquestionably, I want you to know that my neighborhood is, and always was, wonderful . . . On my side of Napoleon Avenue, it is in good condition because the neutral ground now has a walkway in the middle of the street that you can walk up and down; it also has trees and garbage cans. Many people walk or ride bicycles/tricycles on the path and everyone truly enjoys it. Walgreens is on the opposite side of South Claiborne Avenue and CVS is on my side. Since I no longer drive a car, it is truly a great neighborhood to live in.

1: (Janes v. CIBA-GEIGY Corp.[$20 million settlement on behalf of property owner class affected by the seepage of volatile organic compounds from chemical wastes stored on the property in Toms River Township, New Jersey.], No. L-1669-01 Mass Tort 248 (Law Dix. Middlesex Cty., NJ).
2: Station, Wendy, and Ingrid Guerci. "I’m Not the Me I Remember: Fighting Encephalitis." http://www.inspire.com/

 
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Rating: 5 stars  

5 people found this review helpful

When my adult daughter was diagnosed with limbic encephalitis, I had no idea what it was or what the long-term implications were. Her doctors were not direct about what her needs would be post discharge. While she was still hospitalized I spent some time surfing the Net and found very little information about this disease, it's impact on one's life, or the long-term prospects. In short, it was very frightening. When I finally came across the Encephalitis Global site, it was a gold mine of information. Reading the stories of so many survivors and caregivers helped me understand what was ahead and that we would not be alone on our journey. Thank you Wendy and Ingrid for starting Encephalitis Global and helping us to know what we might expect. Without this site, I would definitely have been in panic mode while stumbling around in the dark. With the information provided by other survivors and caregivers, I immediately began the process of applying for disability and financial assistance, which allowed my daughter to get the services and assistance she needed quite quickly. And it continues to be the place I go while trying to better understand what my daughter is experiencing and how I can help her.

 
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