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Encephalitis Global, Inc.
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.

MY ROLE:
Board Member & I helped survivors of encephalitis get in touch with others; encephalitis is a very rare disease and probably nobody else in your town has had it. This is a great way to 'speak' with others and to compare notes.

Encephalitis Global, Inc.
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

MY ROLE:
Client Served & Survived Herpes Simplex Encephalitis in December 1995.