Thoughts on aakp

[dialysta]

I notice you link to the aakp but not other groups ... are you involved in the aakp or support their activities/approach?

What is it that you like about the aakp?

I saw this thread
http://www.dialysisethics.org/forum/viewtopic.php?p=5537#5537
... seems about right.

[Epoman]

I notice you link to the aakp but not other groups ... are you involved in the aakp or support their activities/approach?

What is it that you like about the aakp?

I saw this thread
http://www.dialysisethics.org/forum/viewtopic.php?p=5537#5537
... seems about right.

Nothing really, I just added some links when I was building the links section. I am in no way affiliated with them nor am I involved or support their activites. In fact after I research this some more, I may delete the link to them.

- Epoman

[dialysta]

It seems like they're just a hoax ...  or some kind of ponzi scheme designed to milk the renal corporations out of money which they use to put out banal magazines and hold expensive parties conventions once a year.  And now they've decided to spend money on Washington DC lobbyists.

I should confess though that I hate the word patient and would never join an association of patients and that rules out Davita Patient Citizens too ... not that it was ever in the running.

I kinda like the Renal Support Network http://www.rsnhope.org/ they're doing a weekly podcast http://www.rsnhope.org/programs/kidney_talk3.php.

I like the podcasts because they have public service style announcements instead of commercials.  Epoman you should volunteer to be the subject of a show.

[Epoman]

It seems like they're just a hoax ...  or some kind of ponzi scheme designed to milk the renal corporations out of money which they use to put out banal magazines and hold expensive parties conventions once a year.  And now they've decided to spend money on Washington DC lobbyists.

I should confess though that I hate the word patient and would never join an association of patients and that rules out Davita Patient Citizens too ... not that it was ever in the running.

I kinda like the Renal Support Network http://www.rsnhope.org/ they're doing a weekly podcast http://www.rsnhope.org/programs/kidney_talk3.php.

I like the podcasts because they have public service style announcements instead of commercials.  Epoman you should volunteer to be the subject of a show.

Yeah right Lori would never have me, she probally thinks I'm to negative if she only knew the truth. But it's ok I have a BIG surprise coming soon that is going to make this site really get noticed. shhhhhh it's a secret, a big secret. I will post about it soon. STAY TUNED!

- Epoman

[Epoman]

AAKP link removed added Renal Support Network instead.

- Epoman

[kitkatz]

More secrets? Aaaaugh!

[girlfriend]

Secret? someone mention secret??

LOL  Love SECRETS

[angieskidney]

It seems like they're just a hoax ...  or some kind of ponzi scheme designed to milk the renal corporations out of money which they use to put out banal magazines and hold expensive parties conventions once a year.  And now they've decided to spend money on Washington DC lobbyists.

I should confess though that I hate the word patient and would never join an association of patients and that rules out Davita Patient Citizens too ... not that it was ever in the running.

I kinda like the Renal Support Network http://www.rsnhope.org/ they're doing a weekly podcast http://www.rsnhope.org/programs/kidney_talk3.php.

I like the podcasts because they have public service style announcements instead of commercials.  Epoman you should volunteer to be the subject of a show.

Yeah right Lori would never have me, she probally thinks I'm to negative if she only knew the truth. But it's ok I have a BIG surprise coming soon that is going to make this site really get noticed. shhhhhh it's a secret, a big secret. I will post about it soon. STAY TUNED!

- Epoman

Epoman, I have met Lori in person and even though she might think you are negative with how she gives talks all over North America (that is not just the United States but Canada too) lifting up our spirits and gving supportive talks on how to deal day by day with dialysis and renal disease, she does understand what it is like to feel the negativity set in with being sick since she was 2 years old. She knows so well how to turn negatives into positives and Epoman, I have to say you have done that yourself here! Don't sell yourself short! I think she would be interested in your story, especially talking about this site! I have been to many sites myself, and I am a harsh judge that takes everything to heart and I have to say, I am impressed with what you have done here so far!

Anyway, I don't know what you have planned but I will be here when the big surprise is unvieled The only reason I won't be is if I get called for a transplant!

[Mom3]

My spouse and I once attended an AAKP convention and found it helpful...and the party part was encouraging in a way. There is life after dialysis!

Is having lobbyists a bad thing? Doesn't someone need to fight for funding etc?

Maybe I am really naive about the organization??? There must be reasons if everyone else is so negative...and by the way>What are thoughts on the PKD foundation?

Thanks,
Mom 3