Deb Carson Fundraiser for LE

Well, here's the bad news: the NLN has decided to create these kits--and distribute them vs. creating a truly patient friendly/provider appropriate website.

A couple of the women who post on these boards tried to honestly explain to the NLN what patients/providers need, and were dismissed.

So, if you go on the NLN site, and don't find anything of value there, or find they're not meeting your needs, let them know.

IMO, they don't need to create these "kits"--but to truly commit to educating patients and providers and stop treating patients as second class citizens who are not welcome at their conferences, and they write documents that few patients can understand--and when an LE advocate "translated" them, she got blasted.

The NLN: the only organization out there for us, and yet not really meeting our needs.

You realize you have to pay to be listed on their site--it's no guarantee of a good therapist--and my therapist got zero referrals from her listing and dropped it.

After a particularly nasty exchange with them over their position papers and the use of evidence, I don't deal with them.

Their most recent advocacy was to create a press release re: the risk reduction myth paper, and then not release it. Some advocacy.

It's sad, really.  The NLN asked  those of us in their official patient-advocacy group what we suggest to support expanding LE awareness.  (''Official advocacy group" meaning we paid to attend NLN conference as part of the Lymph Science Advocacy Program, which was a wonderful experience and I'm not sure why any patient cannot attend, and the patients should not pay full freight because we're not reimbursed by employers and we do not get continuing education credits for the experience).  We said: educate the surgeons and oncs and the primary care docs who see us all, including those with primary LE.  But instead, NLN decided, without continuing any conversation with us, to create 'kits' we have never seen, and to distribute them to breast centers 'everywhere.'  Only the flaw in that logic is that unless someone educates the docs about the need to do baseline measures/ educate patients in our LE risks and in self-surveillance of symptoms, they won't give out any kits.  There are LE pamphlets 'out there' and the MDs have access to them.  But how many of us ever saw an iota of ink dedicated to LE education (except from an LE therapist, the majority of times after we already had LE!)?

Kira's so right that NLN, which in many ways had provided a wonderful research platform for LE, is out of touch with patient needs.