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January 4, 2001
Day 84 still finds us in San Diego, CA suffering the 70 degree temps while the entire USA is suffering severe winter storms...
Celebrating Christmas and then being able to lie by the pool was kind of interesting.
The media was pitched {twice so far} but, unfortunately, they have not showed any interest in helping with PKD awareness. This was very sad for me because the exact same thing happened last time I was in San Diego. With the potential to reach so many and the media won't help is the frustrating part of the PKD Road Warriors' public awareness campaign. I have tried my best but Southern California media, including Los Angeles, just don't seem to care! Now the people in these communities will have to continue to suffer alone.
One good thing is that the new Coachmen RV has graphics on it and I am parked in a great place at my RV park. There are about 1000 sites and thousands pass through here. Every day, many stop outside the RV and read the graphics so I just hope some of those are PKD sufferers...
After my great birthday party, Dec. 16, I have suffered a health set back. Dec. 20 I awoke to severe pain and was trying chiropractic since then. Then, Dec. 30 I went to emergency for severe urinary/kidney infection. Since Dec. 20th I have barely been able to walk with both bad back and infection. I am on meds helping now but it is a slow process but I am resting hard so I will able to head out across country mid January to stay on my scheduled itinerary. May be forced to stay longer until I am well but, rest assured, I am trying my best to get out there to reach more people suffering with PKD!
In the meantime, John Guarino {the Connecticut PKD Friend's Coordinator} whom I call my "mini agent" has landed another feature story for us with a web zine called "Incredible People". Tuesday we completed the phone interview and provided photos so the story should be up soon at {www.incrediblepeople.com}. Check it out! They have also provided a couple of very promising leads to other media that could help gain "national exposure" so thanks Incredible People!
With the holidays and San Diego media's lack of interest this is a slow media time which I had anticipated. I just wanted to let you know how things were and let you know that the PKD Road Warriors are still out there trying...
Hope all of you had a wonderful holiday season and that the year 2001 will be the year of the cure for PKD for all of us!
For any of you that have not joined the PKD Foundation please do so by calling 1-800-PKD-CURE, now! This is an exciting and critical time with a new drug going into clinical trials, as I type, that may be our cure but they need more money! The PKD Foundation sent out info. stating that they were also $455,000 short to even fund projects on the books! If we want the cure we have to get out there and raise the money! We have no choice so lets just do it and end this PKD suffering in our families forever! Together we can do this and END PKD FOREVER!
Cecilia Maida & Max
The PKD Road Warriors
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