Ken,
What type of on-line services are you looking at right now? It would help us provide you more feedback if we knew some of what you were looking at doing. I know on-line marketing is probably a big part of your job, but other services would be supportive and draw more people to the website as well
I've noticed there are some blogs on the PKD website and they look good. The website itself is vastly improved and so much easier to navigate!
Some suggestions for tools: bring back the ability to read about ADPKD and ARPKD without opening the pdf documents about the disease. I think we'll get much more bang for the buck if the information is readily available when you click on the "About PKD" header at the top of the home page. Right now it takes a few more levels of digging and that is a bit frustrating, even for those of us well versed in the disease.
A monthly "talk to the specialist" forum on the website would be great if some of the top researchers would agree to participate. Or perhaps just add more Q&A opportunities instead of leaving them strictly in the PKD Progress quarterly magazine (or buried somewhere on the website). Obviously all would come with caveats that each patient needs to be evaluated individually, but as you can see from our main message board, we all have questions and being able to get answers from the experts more than once per quarter would be of tremendous benefit.
Add a section specifically addressing pain management in PKD to the "About PKD" section, to include the recommended pain management options (per Dr Watnick's PKD conference presentation from the 2006 conference if a presentation wasn't made this year--all I saw were some slides in the PLD presentation and they aren't very complete with statistics on number of patients who experience pain, etc.). Pain is a particularly difficult aspect of PKD and for some reason many nephrologists refuse to believe pain is a part of PKD. If the foundiaton has a specific section under "About PKD" dedicated to pain management and the experts in the field identified, it would help an untold number of patients get their doctors to understand that this disease can really hurt!
I tend to write novels, so I'll finish for now. Hopefully this will get more discussions rolling so we can help you improve the support the foundation is already providing to the patients and the community.
Thanks for asking!
Ruth
PS There are two figures on the website for the amount of money raised that goes to the mission of the foundation:
The donation page says 81 cents of every dollar
The walk page say 89 cents of every dollar
The reason is the walk has a low overhead cost thanks to the amazing volunteer and community support. I think it would be helpful to explain why more money raised during the walk goes towards the mission than from any other source. This would help us get more walkers and supporter as well as help increase the walk attendance and fundraising efforts!
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