Encephalitis Global, Inc.

Rating: 5 stars   19 reviews

Issues: Health

Location: 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
2010 Top-Rated Nonprofit
Write a Review
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

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.

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.

Was this review helpful? 
1 previous review
Rating: 5 stars  

13 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

Was this review helpful? 
Rating: 5 stars  

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.

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.

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.

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

Was this review helpful? 
Rating: 5 stars  

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

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

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

I wouldn't change anything

Was this review helpful? 
Rating: 5 stars  

3 people found this review helpful

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.

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

great things

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-1-01

Was this review helpful? 
Rating: 5 stars  

5 people found this review helpful

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.

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.

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?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

9 people found this review helpful

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

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.

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?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

13 people found this review helpful

I use this site everyday and it helps me cope with my problems. Its always easier to talk to people that you can relate to even through the internet especially since there aren't many who even know what encephalitis is.

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

This organization has helped me with emotional & physical problems.

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

it gives us the chance to find support for problems. It shows us that we are not alone.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

14 people found this review helpful

I found this site shortly after I got out of the hospital. I had never heard of encephalitis before. This group of wonderful people, caregivers, family members, friends and survivors of this debilating virus has been so chock full of information. Knowing there are people who fully understand me is refreshing.

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

Getting people together. I had the priviledge of attending a FACES conference. It was absolutely wonderful. The speakers, the accomodations, the camaraderie, everything is so well planned and set up. The e-mail and group discussions are very encouraging

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

I would get more professionals involved. Not just at the conferences, but possible on line to answer questions that our regular doctors can't. Doctors who truly understand encephalitis.

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

The camaraderie of all the members on line. The understand and uplifting discussions we have. We have such a diversified set of people and yet one thing in common has brought us together. We share our up and downs.

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

Wendy and Ingrid and all the rest are always ready to help in anyway they can.

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

spread the word that there is help for encephalitis survivors and their families. Hire qualified medical staff to research causes and cures for all types of encephalitis.

Ways to make it better...

I could go to each and everyone of the conferences.

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

spreading the word that there is life beyond the initial recovery period.

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

15 people found this review helpful

I have been to this site since their inception. It is a excellent resource for people who have been or a loved one who has been effected by this disease. It also is a great site to find others that have been affected.

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

links to sites for information,finding others affected

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

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).

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.

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.

Was this review helpful? 
1 previous review
Rating: 5 stars  

16 people found this review helpful

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.

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

Emotional support and information about the disease.

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.

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?

2010-6-01

Was this review helpful?