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June 26, 2010

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June 26, 2010

When I had encephalitis in 1999, it was near to impossible for my family to find helpful information. Some professional medical information could be found, but it was impossible for non-professionals to decipher.

The Great!

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

Encephalitis Global has permitted folks to get together and exchange thoughts, ideas and personal experience. It's excellent to know I'm not alone!

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

learning and understanding from others... then sharing what I have learned.

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

travel across North America, speaking with brain injury groups to help them understand.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

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.

The Great!

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!!

Ways to make it better...

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.

More feedback...

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

June 26, 2010

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June 26, 2010

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.

Photos

The Great!

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

This organization has helped me with emotional & physical problems.

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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

June 25, 2010

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June 25, 2010

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

The Great!

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

FINDING OTHERS WHO HAVE EXPERIENCED THIS DISEASE

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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

June 17, 2010

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June 17, 2010

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.

The Great!

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

Ways to make it better...

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.

More feedback...

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.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 11, 2010

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June 11, 2010

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.

The Great!

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

links to sites for information,finding others affected

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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

June 10, 2010

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June 10, 2010

After the doctor who has treated people who have had their brain infected with encephalitis told me that I was his first patient to survive this infection in twenty-fours of treating about two cases every three years, I understood why he did not know much about a survivors experience. Encephalitis Global allowed me to see that I was actually doing much better than most of the others who were fortunate enough to survive this rare disease. Just knowing how fortunate I was allowed me to quit being the painful bitching survivor that was driving his wife crazy.

The Great!

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

coming to grips with the slow recovery from an encephalitis infection in my brain.

More feedback...

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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