[echoes long ago]

The Neuropathy Association has dissolved and is steering people to the Foundation for Peripheral Neuropathy


Announcement:
Neuropathy Association to 'Pass the Torch' to
Foundation For Peripheral Neuropathy

View as a PDF file...

December 2014

1+1=3

Dear Joseph,

1+1=3 may earn little Johnny a failing grade in school, but it can be a winning formula for The Neuropathy Association and the Foundation for Peripheral Neuropathy (FPN), two organizations with the same goal -- finding cures for Peripheral Neuropathy (PN) and, before cures are found, helping patients live better lives.

Since 1995, The Neuropathy Association (the Association) has focused its efforts on helping and healing people with peripheral neuropathy through awareness, education, support, advocacy, and research. We have made tremendous progress during those nearly 20 years, growing into an organization with a global online reach. We have championed the development and approval of IVIG; created National Neuropathy Awareness Week; testified before Congress for more neuropathy funding; provided numerous research grants; and have played a direct role in creating the soon-to-be-released National Pain Strategy, a major advance in treatment and care. And, every day, we have strived through our network of support groups, chapters, Neuropathy Medical Centers of Excellence, and affiliated researchers and physicians to provide the highest level of service to the neuropathy community.
*edit
copyright - © 2014 The Neuropathy Association

http://www.neuropathy.org/site/News2...s_iv_ctrl=1101

[baba222]

Thank you.
I have contacted the Foundation several times with no response. I am thinking their mission is for the healthcare providers?
Thoughts?

[echoes long ago]

my thoughts are as usual we are between a rock and a hard place with little to no help. there is also a group called the neuropathy action foundation in california.

[glenntaj]

--I have made my share of criticisms over the years as to how the Neuropathy Association operated, particularly its inability to get more publicity for the condition and its tendency not to cooperate with other neuropathy/neurologic organizations.

This, of course, doesn't alter the fact that the Association has had to operate under very trying conditions, particularly regarding funding and personnel. How much of this was its own fault is certainly debatable. The Pacific Chapter of the Neuropathy Association, which has operated almost as its own entity for along time, certainly has had a wider reach:

http://www.pnhelp.org/

The Foundation that the Association is folding into is affiliated with the Jack Miller Center in Chicago and has been funded to a great extent by Miller himself, but I can't say it has been any more successful at the publicity thing, as it has concentrated more on research than outreach.

We will see if this consolidation helps focus the activist community. (I do think any organization worth its salt should be leveraging the knowledge right here at Neurotalk.)

[baba222]

Originally Posted by glenntaj

--I have made my share of criticisms over the years as to how the Neuropathy Association operated, particularly its inability to get more publicity for the condition and its tendency not to cooperate with other neuropathy/neurologic organizations.

This, of course, doesn't alter the fact that the Association has had to operate under very trying conditions, particularly regarding funding and personnel. How much of this was its own fault is certainly debatable. The Pacific Chapter of the Neuropathy Association, which has operated almost as its own entity for along time, certainly has had a wider reach:

http://www.pnhelp.org/

The Foundation that the Association is folding into is affiliated with the Jack Miller Center in Chicago and has been funded to a great extent by Miller himself, but I can't say it has been any more successful at the publicity thing, as it has concentrated more on research than outreach.

We will see if this consolidation helps focus the activist community. (I do think any organization worth its salt should be leveraging the knowledge right here at Neurotalk.)

What about a campaign for folks to contact them and let them know how many folks are hurting? Possibly telling their story?