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7173trees

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THE PACIFIC CHAPTER OF THE NEUROPATHY ASSOCIATION
July 7, 2010

All my life I've known my feet didn't have the strength and capability of most of the people I knew. It wasn't until after my brother and I were diagnosed after I retired from 34 years of elementary teaching that I found out why. I was diagnosed with peripheral neuropathy. What do I do now was on my mind as it is for everyone being diagnosed with this most common disease you've never heard of. I joined The Neuropathy Association and found out there were support groups in other areas but not near me. A friend and I agreed to have a meeting to see if there was any interest. We thought a few might come because it was in the FYI column on the front of the local newspaper. 33 people showed up, enjoyed the evening, learned from each other and said, "We're meeting next month, aren't we?" The group grew and helped many people and ourselves learn more about neuropathy. (Your brain and spinal cord are you Central Nervous System. All the rest of the nerves are peripheral nerves. AMA says any disease or disorder in the peripheral nerves is called neuropathy. Over 20 million people in the United States has it - diagnosed or undiagnosed.) Some people in the group came from a distance and decided there should be a group near them. I did some traveling to start new groups. Today, we have 53 groups formed or forming throughout Northern California. Basically, there is one within driving distance of everyone north of a line from Fresno to Monterey. We are in a challenging situation. Nearing 1,000 members and having volunteers that don't have the time and/or the health to carry a heavier load, we are in desperate need of staff if we are to reach out to others with neuropathy that have no idea of what this diagnosis means or what can be done about it. To meet with a group of people in a new city who are so amazed at the information and respond with questions and new knowledge is such a exciting experience, but to know there are thousands out there that have never had help offered breaks my heart.

The Great!

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

learning about my hereditary neuropathy and ways I received information about what I can do to help deal with symptoms, and was given the opportunity to be involved in helping others.

Ways to make it better...

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

Find a way to hire staff to do the clerical,financial,and leadership roles for the organization so the organization can expand to a wider territory where people wait for helpful information.

More feedback

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

gathering helpful information and sharing it with people to whom it is good news.

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

friendly,dedicated, and really cared for people with neuropathy and those that care about them.

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

Reach people in many states where there is yet no network of support groups which would include hiring and deploying excellent staff.

Ways to make it better...

other active people's health would have held so they could continue what they did in support of each other.

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

Funding for expansion of services.

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

If all those that have been helped in the 10 years since the first group were totalled it would be at least several thousand.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
Board Member & I helped start this non profit in November 1998 in Auburn, CA.