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June 27, 2011

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June 27, 2011

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.

The Great!

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.

Ways to make it better...

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!

More feedback...

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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