Tony...don't mean to seem picky...but the releases 'said' raised $150,.k from the EVENT...did not say what the 'net' was after expenses... The celebrities 'cited' aside from Sr. Hart, did not imply or indicate actually HAVING PN...only a 'familiarity' to it... I for one, would like to know HOW 'familiar'?

DUH? WHY would I want to join the PN Assn, when the info they post on the condition at their site [aside from newsletters -available ONLY to those who pay to join] is at least 5 years out of date? I need only to refer anyone to the info on IVIG that they post...Not to mention the issues mentioned here, at the PN Assn site, and many many other places regarding their lack of public clarity in terms of their finances, expenses, and, not even who is on their board of directors!....Obviously one board member has an either actual or potential conflict of interest based on what you have shown us....

One thing I KNOWis boards, I used to fund federal programs to encourage board development for non-profits...walking that board LINE can be a sticky issue. Acknowleging board members is a sticky issue, politcially, policy-wise and pragmatically. THIS is an issue discussed about other non-profits on other boards.

IN this case, tho, I ask you, what was Patricia Neal in rehab for? If I recall correctly, it was a possible toxin-related source of neuropathy. No pain is to be sniffed at, or scoffed. I am just not finding any counter-point PSA's to the ads on restless leg syndrome...initiated by the organization claiming to be a leader for those with PN. I don't see any leadership, I see followers all.

Further, how was their survey conducted? No background or stats. Humm. No details, probably one should question the quality of the survey.

I agree with Kmeb, that other site is interesting as a potential alternative. One to be thoroughly read. - j