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October 16, 2012

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October 16, 2012

I am a survivor of herpes simplex encephalitis which I got in December of 1995. I was out of work for over three months but when I got back, because of who I worked for, I was allowed access to the internet. The first thing I looked up was encephalitis and found a support group run by Debra Caires for the National Encephalitis Foundation which no longer exists. I manually took over receiving/copying/pasting all emails and then when Yahoo offered free 'groups' I signed up and all of the few members joined as well. Wendy Station, also a survivor, contacted me and we became a nonprofit organization, Encephalitis Global, Inc. (www.encephalitisglobal.org). That was about 10+ years ago. Since then, our support group is online through Inspire and we have almost 2000 members worldwide. Enncephalitis is a very rare illness and most doctors have never seen a case so when you as a question about the residuals, they don't really have an answer. Our members are survivors and their caregivers. We ask questions and give advice and let our members know we aren't doctors but a support group. Our group is very active and we have over 200 messages per week.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

July 15, 2011
1 person found this review helpful

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1 previous review
June 25, 2010

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 ... more

July 15, 2011
1 person 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.

The Great!

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.

Ways to make it better...

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

Do nothing.

June 25, 2010

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.

The Great!

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.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

July 4, 2011

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July 4, 2011

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.

The Great!

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

my daily life.

Ways to make it better...

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

change nothing.

June 11, 2011

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June 11, 2011

I joined Encephalitis Global in February 2011. Ten months prior I was in a coma and had been diagnosed with Meningoencephalitis. This illness left me with memory problems, speech problems, problems walking, weakness down my left side, constant nausea and vertigo and severe fatigue. Returning to functionality has been hugely challenging and, for the most part, lonely. No one around me knew anyone who had survived Encephalitis.

Then my wife and I discovered Encephalitis Global. It was like a homecoming! Suddenly there were 1,000+ people who knew what I was going through as a patient, and what my wife was going through as a caregiver. The comaraderie has been immensely strengthening and encouraging. I don't know what we would do without E Global!

Thank you Wendy and Ingrid for your perseverence for the past 10 years. It has paid off in my life... and in the lives of countless others.

The Great!

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

My regular contact with other survivors of Encepahalitis has helped me remember that healing from an aquired brain injury (ABI) takes lots of time. My "Encephalitis Global Family" has reminded me to count small successes as important steps in the right direction. They've affirmed me in my progress and, thus, raised my level of self-confidence. The people on Encephalitis Global understand how discouraging, even infuriating, mental confusion can be. And they've helped me not "throw in the towel" and give up.

Ways to make it better...

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

Encepahlitis is a fast moving and devasting disease. Those who are diagnosed quickly stand a much better chance of survival with minimal impairment. I want to help Encephalitis Global develop a national initiative to education and train primary care physicians, ER doctors and those who staff urgent care facilities how to diagnosis Encephalitis early on, thus saving lives and minimizing suffering.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

I found this group through a Google search for Encephalitis.

What, if any, change in your life has this group encouraged?

This group has given me a possible new direction for my volunteer time and energy. I want to help Encephalitis Global alleviate suffering -- both the suffering of isolation brought on by the illness, as well as the direct physical and cognitive suffering of this debilitating illness.

When was your last experience with this nonprofit?

2011

June 11, 2011

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1 previous review
June 10, 2010

I am a survivor of HSE and am also one of the founding members of this support group. I took over another group from a woman in Califiornia (Debra Caires) and transferred it to a yahoogroup and Wendy... more

June 11, 2011

We are a support group for survivors of all types of encephalitis, their caregivers, families and friends. We discuss what the residuals of encephalitis are and how to function. Most of us have severe headaches everyday, memory loss, are tired, can't function. Many of us were unable to go back to work and live on disability.

We are a worldwide organization and, for those interested in attending, we will be having a 3-day conference in November (see our website for details).

The Great!

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

Our group has over 1100 members. My personal experience has been reaching out to others, getting to meet them, asking questions and giving advice.

Ways to make it better...

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

If this group could afford to publish ads in medical journals letting others know that we are out there and publishing informaton about this illness, that is what I would do. I am hoping that more of the caregivers and family who did not have this brain illness would step up and get the word out.

June 10, 2010

I am a survivor of HSE and am also one of the founding members of this support group. I took over another group from a woman in Califiornia (Debra Caires) and transferred it to a yahoogroup and Wendy Station and I formed this group. We have reached survivors and caregivers worldwide and each year we try to have a meeting so that others can meet other survivors face-to-face. You cannot believe how comforting it is to know that you are not alone. Encephalitis is a very rare disease, hard to diagnose and most doctors have never seen a case of it so, to survive is a miracle in itself. The day someone joins this group, they never feel alone again.

The Great!

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

Emotional support and information about the disease.

Ways to make it better...

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

I wish there were a way this group could reach out to all doctors, caregivers and survivors so they know we're here.

More feedback...

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

I am not alone.

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

Wonderful.

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

Hire doctors to do more research on how to educate medical students, doctors in the ER, etc. and try to find help in bringing back our memories.

Ways to make it better...

We had more volunteers.

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

Funding. Most survivors are out on permanent disability and they cannot attend our meetings because they cannot afford to.

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

The group is more of a family to me than my family.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 16, 2011

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May 16, 2011

I can't remember how I stumbled on to inspire.com, but since I got sick with encephalitis, this site has been a lifeline for me; when I feel I can't go on, I log on and I'm encouraged by people living through what I'm going through and by people further down the recovery road
and I often find
posts which help me explain to those on the outside what it's like being this new me

The Great!

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

some days I feel suicidal and talking to others like me helps chase those thoughts away

Ways to make it better...

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

I wouldn't change anything

July 24, 2010

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July 24, 2010

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.

The Great!

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.

Ways to make it better...

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

July 20, 2010

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July 20, 2010

this has helped me in so many ways i felt so alone and now with this group my fear of being the only one and having noone to talk to is finally gone.

The Great!

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

great things

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 27, 2010

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June 27, 2010

Encephalitis Global, Inc. provides an excellent source for survivors of encephalitis, caregivers and family members. Encephalitis, recovery and rehabilitation can be mysterious, puzzling and extremely stressful for all involved. Whether the formal diagnosis is viral, bacterial or a resulting condition from head and brain injuries, the Encephalitis Global, Inc. forum is a place for survivors and caregivers to gather and share experiences and suggestions. Common residual deficits, both cognitive and physical, are easier to understand and cope with when information is shared among survivors and other caregivers. The founders of Encephalitis Global, Inc., Wendy and Ingrid, are both survivors of Encephalitis. They have provided online access to a safe and nurturing environment.

The Great!

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

Daily review of survivors and caregivers posting in the online forum. I was also able to attend the 2009 FACES conference and meet many caregivers and survivors.

More feedback...

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

it provides valuable social support to encephalitis survivors and caregivers.

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

the founders, other survivors and caregivers.

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

reach out more widely with brochures, as well as announcement space in medical publications. It could also set up a fund for a speakers bureau.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 27, 2010

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June 27, 2010

Hi. I love this site. I was diagnosed with steroid response encephalitis in 2007 and when I learned about this site, it was a welcome community for support and inspiration. More needs to be done to inform others about this illness and this nonprofit site is just one step on the path to doing so. Thank you Encephalitis Global Inc. for your work and for creating an online community of members who truly inspire others. Best, Mary Napoli

The Great!

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

Since I learned about the site, I have recommended it to others and informed my neurologist to share it with other patients.

More feedback...

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

opportunity to network with others

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

I have not met them in person, but only through e-mail. They take the time to send a note to each member welcoming them to the on-line community.

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

certainly help others learn about this devasting illness and provide more public awareness and do more in the medical field , increasing literature for patients, creating on-line doctor networks, hosting international/national conference for awareness, et

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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