THE PACIFIC CHAPTER OF THE NEUROPATHY ASSOCIATION

Rating: 5 stars   9 reviews

Issues: Health, Cancer

Location: PO Box 6985 Auburn CA 95604 USA

Mission:

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Community Reviews

Rating: 5 stars  

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.

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

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1 previous review
Rating: 5 stars  

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.

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.

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.

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Role: Professional with expertise in this field
Rating: 5 stars  

The Northern California Chapter of the Neuropathy Ass'n has consistently provided very concrete information regarding the clinical trials as well as the anecdotal reports of the range of treatments (neuro-protective, and neuro-supportive) as well as palliative (pain reducing) methods that are offered to people with neuropathy. They are careful to distinguish between 'anecdotal' versus clinical trial data. What is amazing is how well organized and accessible the information is on their website and in the meetings, hosted by volunteers, who often keep good information on hand for those w/o internet access. The monthly support groups, with speakers at some meetings are a wonderful way to gain support from others who share this strange, debilitating and demoralizing condition and to hear from people who have helpful insights to share. The president of this chapter (Bev Anderson) has gone "above and beyond" with her informative newsletter, getting discounts for members (treatments can be expensive!) and was a member of the California Neuropathy Legislative Task force. I am very grateful that I stumbled upon this organization. Not only am I a client served, I am also a gerontology social worker, and I often refer patients (chemo-induced neuropathy and diabetic neuropathy) to their website and to their support group meetings. The local facilitators are VERY good! (as good as many social workers!) Additionally, Bev Anderson herself travels to small chapters to help them get started, and fills in as a facilitator when no one else can do so. The website is beautifully easy to navigate, and I used materials from their website for a presentation I gave at an oncology social work conference in May 2011 (last month) as well as to oncology staff at our local hospital.
It is important to note that neuropathy is actually relative common -- 22% of those over age 65 and more than 50% of those who have had diabetes for 10 yrs. Yet - it is very poorly managed by medical professionals who tend to rely on pharmaceuticals that only mask the pain, and don't address supporting the nerve or supporting safety/patient care (eg loss of balance, de-conditioning, cuts/burns .. all the things that arise as a result of neuropathy). Inability to button, to drive, to use fingers ... all activities that need physical therapy or occupational therapy to re-train the body/brain on how to do things. The NCCNA promotes self-efficacy in a safe and compassionate manner, in a topic that has no other source for info & support.

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

Hearing people's gratitude that this organization exists (information and local support). At the hospital I've met patients who were in tears over how little this condition is understood or validated. Even the doctors often say 'oh take gabapentin' (an analgesic that has side effects that many patients don't like). It doesn't address the pain or disability. People see my bumper sticker and will ask me about it in parking lots. Neuropathy is vastly under-treated and mis-understood.

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

No changes that I can think of - only to Imitate this chapter's website and its extremely well-focused efforts in other organizations!

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

The very astute organization o the website with truly useful, practical information. They run on such a small budget and provide such a great service for a condition that is actually fairly common -- 22% of people over age 65 suffer from neuropathy -- and yet so under-treated. I work with cancer non-profits - again a great cause etc.. but there are many out there. There are no other orgs. providing a neuropathy focus.

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

All I knew was that I had Neuropathy and that it was driving me crazy because the pain in my feet was so bad that I couldn't sleep. I then joined the local group in Auburn, CA. where I learned much more with speakers & videos. I was given a sample of Neuragen to try & rub on my feet before I go to bed each night & it worked. Now if I can't sleep, it is not because of Neuropathy. For me the Neuropathy Group has been well worth it & I continue to learn more.

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

pain relief

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

I can't think of any changes now.

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Rating: 5 stars  

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.

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.

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.

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Rating: 5 stars  

I currently chair a group for meuropathy . I am indebted to the Pacific Chapter of the Neuropathy Association and all the information and data they supply v idualThe organization is needed for the all the individuals
with this inflictioin .

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

Thai organization has been very helpful to me by informing me of the latest medicines and procedures.

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

Put more information on a web site and mail out updated materials.

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Rating: 5 stars  

1 person found this review helpful

I first joined the Northern CA Chapter of The Neuropathy Assn. (recent name change to: The Pacific Chapter of The Neuropathy Assn.) to better understand and cope with this chronic nerve disease and soon found out about their network of support groups. After attending the group in San Jose, CA. for close to six months, I became Asst. Leader, and a few months later the current Leader resigned, so I moved up to Leader. Four years later now, and still enjoying this volunteer position!

This organization, led by Bev Anderson, President & Founder, focuses on helping the patient with coping skills, education and practical advice. For me, attending support groups and neuropathy conferences is empowering and I'm always learning something new.

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

helping to manage the chronic pain and muscle weakness associated with neuropathy. It really helps to speak to others with the same problems.

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

try to get better media coverage, so more patients would know about us.

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Rating: 5 stars  

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.

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

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

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Rating: 5 stars  

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.

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.

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.

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?

2010-7-01

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