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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More Info

604 980 2236
http://www.encephalitisglobal.org

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Reviews for Encephalitis Global, Inc.

Role: General Member of the Public
Rating: 5 stars  

5 people found this review helpful

My daughter was diagnosed with Anti-NMDA Receptor Encephalitis in 2014. I posted her story on this site and asked for help. A parent replied and gave me the contact information for the neurologist who was instrumental in her treatment and recovery. I am thankful for this site and review it often for encouragement and support.

 
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Role: General Member of the Public
Rating: 5 stars  

6 people found this review helpful

I am thankful for Encephalitis Global. After my life changed drastically in March 1996, I felt no one could relate. But meeting my new friends and hearing their stories, I felt like I had met a new family. Thank you!

 
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Rating: 4 stars  

6 people found this review helpful

As a survivor of West Nile Virus with Encephalitis I have found Encephalitis Global to be very helpful in moving beyond my brain injury and nuerological complications.
In 2012 i was infected in MN. After I survived the coma and was able to leave the hospital a month later I was trying to get back to normal without much of a support team since my insurance benefits had maxxed out. When my battle to return to full time work had failed and my primary doctor saw my quality of life deteriorating, he referred me to get some help for my needs. The state unemployment office vocational rehabilitation office also encouraged me to find assistance. I started on a winding mystery journey. When I consulted the MN Brain Injury Alliance in order to navigate the web of services they directed me to encephalitis global online support group. This group has provided me a great connection with other folks who are fight for a better future. i gaained her a broader perspective of the battle i was in, as well as how to see a brighter potential future. Eahc of our experiences is unique and yet we feel a part of a community. My dark days are less dark because I lean on and learn from my sister and brother survivors and our awesome caregivers who share on the site. My good days are brighter because I also have the opportunity to share my insights and triumphs. Thank you Encephalitis Global. Encephalitis will not win. We fight together.


 
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Role: General Member of the Public
Rating: 5 stars  

6 people found this review helpful

I'm a survivor of Herpes simplex encephalitis. I was hospitalized in Oct of 04. I was released after 10 days with no instructions just seizure meds. I found this site 10 years later in a desperate state trying to find out what's normal. I found much more. I now know my symptoms are very common, and I have gained a tremendous amount of insight as to what are my triggers etc. this is a much needed site and I can't thank you enough for hosting it!

 
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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

I am a survivor of encephalitis, and without the support and encouragement I receive from communicating with other members of Encephalitis Global, my quality of life would be far lower. Being able to go to the forum and "speak" with others who face the same life challenges I do reduces my sense of isolation, and the online forum is a never-ending source of hope, inspiration and coping strategies. The group has had a life-changing impact on me.

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

my daily life.

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

change nothing.

 
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Rating: 5 stars  

3 people found this review helpful

As a member of the encephalitis society in the United Kingdom which has a highly structured professional manageagment team of the highest order and proessional expertise ie regarding research into the what causes encephalitis etc.
As a member of ncephalitis globalI have gained a lot from social interaction with other survivors. Having some minimal experience in community development what encephalitis Global needs is a person who has the ability to what is termed as MBA or Cheif Executive Officer ability like they have at Goodwill in various parts of the United States. Encephalitis (infamation of the brain ) With regards to Wendy and Ingrid they are amazing to achieve wt they have had don so far. To move on they need to develop a business plan because this is needed to obtain funds etc. Encephalitis Global needs so much help because they have such tremendous potential With the recession The Rt Hon David Cameron Prime Minister of the UK speaks about the greater society and with proposed greater co-operation between both oour nations voluntary organisations will need to take more responsibility, and in order to do this Encephalitis Global needs all he help with regards to capacity bulding under the guidence of a Business expert or professional consultant. In essence wit nearly 400 members and growing, this organisation needs to b recognised and aided. As a non US resident the encephalitis societ speaks very highly of them, but have advised me along the lines o capacity building help.

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

Yes as an observer I have seen the organisation grow from strength to strength but Wendy and Ingrid need to bring in experts who will work with them regarding SMART aims and objectives to energise and to develop he organisation for a better future.

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

I belive sociologically this organisation is at a cross roads. The founder is a wonderful charismatic lady, and deserves to be written into medical history. Fot the Encephalitis Global organisation to develop they need to look for the way ahead. The encephalitis society in the Uk would be a good template to work from

 
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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

This is the most valuable and unknown charity in the world. It has helped thousands of people by the labor of two very special people primarily and it now has incredible room for developing into a nationally recognized household name charity that will continue to not only help thousands--but millions of people internationally. I have benefited incredibly by its valuable web-based resource and look forward to see its growth over the next ten years.

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

that I have had encephalitis and when I have had a difficult time with it and understanding it and needed support, as well as my family needed support, we got it from Encephalitis Global ten fold!!

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

see it a national/international well funded organization that gets the funding it deserves and reaches the diverse community that encephalitis touches.

What I've enjoyed the most about my experience with this nonprofit is...

my exchange with its leaders. I have gotten to know their passion for what they do for the charity and it is truly rewarding knowing them and will be great getting to meet them in person soon!

The kinds of staff and volunteers that I met were...

fantastic. They were welcoming and encouraging. I had very positive feedback to every posting I put on my profile and anytime I needed help understanding anything, I got good practical answers.

If this organization had 10 million bucks, it could...

change the face of how Encephalitis is dealt with worldwide!

Ways to make it better...

grant funding were available from the organization for those, like I was, in crisis with encephalitis

In my opinion, the biggest challenges facing this organization are...

gaining the right board of directors and gaining the exposure it needs for the development of the organization.

One thing I'd also say is that...

I cannot wait to do everything I possibly can to help the organization raise ten million bucks!

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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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

I WANT TO THANK THIS ORGANIZATION FOR GIVING US A PLACE TO WRITE OUR STORIES AND GET REPLIES FROM OTHER MEMBERS. IT IS A PLACE THAT WE CAN EXPRESS OUR FEELINGS TO OTHERS THAT SEEM TO UNDERSTAND AS THEY TOO HAVE BEEN TOUCHED BY THIS DISEASE. IT IS SO WONDERFUL THAT THERE IS A ORGANIZATION LIKE THIS AS THIS DISEASE CONTINUES TO BE SO MISDIAGNOSED PERHAPS SOMEDAY WE WILL HAVE BETTER HEALTH CARE PROVIDERS WHO ARE BETTER EDUCATED ON THIS DISEASE AND THE MORTALITY RATE WILL LOWER

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

FINDING OTHERS WHO HAVE EXPERIENCED THIS DISEASE

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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