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November 22, 2012

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1 previous review
June 24, 2011

The work done by the Pacific Chapter of the Neuropathy Association (formally NCCNA) is supportive and educational in nature. They always have the best interests of the member in mind...be it regular ... more

November 22, 2012

PCNA is actively working on outreach to Veterans and people with Diabetes who may not understand that their symptoms are typical of Peripheral Neuropathy. By providing information and encouraging engagement in a support group, PCNA offers hope and help to sufferers and their family members. The timely articles in the Newsletter and on the website are testament to the depth of research and commitment of PCNA.

More feedback...

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?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

June 24, 2011

The work done by the Pacific Chapter of the Neuropathy Association (formally NCCNA) is supportive and educational in nature. They always have the best interests of the member in mind...be it regular medical connections, alternative medicine, folk lore or just plain support.

The Great!

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

The annual meeting brought people from all over together to share how PCNA helps and supports them. I was able to take this input to help the organization grow.

Ways to make it better...

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

Expand it so that more people could be supported. We need better social media exposure to get the word out.

June 25, 2011

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June 25, 2011

This organization started with one support group in 1998 and today has 37 active groups and 15 where we have members and have held meetings but leadership has not been found to have an active group of people meeting.

Recently, we have changed our corporate name to The Pacific Chapter of
The Neuropathy Association. This means we can go beyond Northern California and establish support groups in Southern California where there are four groups currently. We have a group in Reno-Sparks but will be free to develop groups in other areas as well. Oregon is also going to join with us.

The need is great. We estimate that approximately 3 million people in California have some form of neuropathy. The chief problem that impedes growth is finding people willing and able to lead a group. We recommend a team of at least two or three to serve as leaders.

The Great!

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

The neuropathy I have is by heredity. I could have been diagnosed in early childhood but was not. Now, that I have learned so much about neuropathy, I can look back and understand why I couldn't do some things others could. I reatly value the help this organization has given me and many others.

Ways to make it better...

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

Find people willing to be leaders, give them training, and support them in many ways as their group develops.

June 24, 2011

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June 24, 2011

This organization does a lot with a little. We have a cadre of volunteers who manage our more than 45 support groups across the state who themselves are sufferers. They do amazing work when they often don't feel well.

The Great!

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

seeing and hearing about the benefit the organization provides from direct comments from the members

Ways to make it better...

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

spend more time fundraising so that we could educate and assist more sufferers of peripheral neuropathy

July 7, 2010
1 person found this review helpful

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July 7, 2010
1 person found this review helpful

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

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