tag:blogger.com,1999:blog-690850457652849477.post3327373136995794644..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Smoothies for Sjogren'sJulia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-690850457652849477.post-87167982656610240922013-08-06T06:36:03.879-07:002013-08-06T06:36:03.879-07:00I know that this is an old post, but I felt the ne...I know that this is an old post, but I felt the need to respond as I agree. I don't mind paying a small fee for the National Conference CDs, but $16 per CD?!? Wow. Way too expensive. How about $25-$30 for all of the conference material which would basically fit on one $.50 cent DVD.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-61711786754765464242012-06-27T12:11:30.646-07:002012-06-27T12:11:30.646-07:00My Moisture Seekers mag got was delivered to a nei...My Moisture Seekers mag got was delivered to a neighbor's house. My neighbor sheepishly told me during a Bunco night that it had been sitting on her counter for weeks. She said it didn't seem like something important. It was a mini magazine. I told her it might be something associated with Sjogren's Syndrome. It opened up a big conversation. No one even knew that I had Sjogren's. <br /><br />Am I the only one that is disappointed that the National Patient Conference CDs are for sale? I teeter totter with the Foundation. I really don't think fundraising should come from the circle of folks you do the advocating for. I think if they spread outside of our little Sjogren's circle it would also spread the word about Sjogren's. The Sjogren's does great work with research but I wish someone would help with the whole fundraising thing. It's off track. <br />When we did our local Sjogren's Walk About we had to donate 75.00 to get a t-shirt. Those things are crazy cheap and really would have done more to spread the word by giving them away. Allergan was the sponsor. (They are the folks that make $$$s with Botox btw)I'm sure they would have had connections to get the shirts to hand out along with the info on Sjogren's. <br />Love the ice cream fundraising idea. Sounds like a cool bunch of people. <br />(Ok...BICA will step off soapbox now)Amy Junodhttp://www.fallingwithgrace.comnoreply@blogger.com