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Wednesday, August 21, 2013

FUNDRAISING FOR POLYCYSTIC KIDNEY DISEASE!
Cindy LeBlanc (PKD Foundation)
 Elizabeth Tuttle (Walk for PKD)
 Marlene Sokol Stewart (Chapter Coordnator)
2013 Cocktails for a Cure
I've been missing but not dormant! The Atlanta Chapter has been fundraising, having just finished our 2nd annual “Cocktails for a Cure” (CFAC) in June, with great success! The event provides you a cocktail, food, silent auction, a raffle drawing and a great time.  Please check in on our Atlanta Chapter Facebook page for pictures. Shy of our original goal, we're thrilled we raised a few thousand dollars to fight PKD. We're hopeful next year will be an even bigger event with more attendees and more auction items! 
Money raised to help find treatments and a cure for this disease is why we all participate. It's certainly why I'm involved and why other leaders in our chapter step up. As a Chapter Coordinator, I hear the stories; I see the pain and the sadness.  As a PKD patient myself it is bittersweet.  I see things that force me to look square into the eyes of my future, even though I don't want to look. There are also days when I've received a call from someone seeking help after recently being diagnosed with PKD.  Their voices are panicked, their hearts are broken and their fear unbearable.  I hope by retelling my story, they can also feel hopeful. I always hope that they will get involved because getting involved has helped me so much. It has helped me feel more powerful, instead of feeling like PKD has the upper hand.
Now more than ever, we need funds to continue our important research. That's why I hope you'll spread the work and attend and participate (and of course, fundraise) in the upcoming Atlanta PKD Foundation events!  We have several fundraisers during the year, so all you have to do it pick one or more!
 
2013 ANNUAL WALK FOR PKD 
          Oct. 12th, Downtown Duluth, GA
          Registration onsite:  9:30 am
          Walk begins at 10:30 am
          Contact: Elizabeth Tuttle
          Volunteer Walk for PKD Coordinator
          atlantawalk@pkdcure.org


 Our walk will be in  downtown Duluth, GA at the lovely Town Green. We will start with the Kids Penny Yard Dash. Kids have really had fun doing this event. After the children's event,  walkers will follow a path around the park.  There will be food and music along with some very special speakers to update us on what’s happening at the Foundation and in the world of Polycystic Kidney Disease.

After the walk you can stroll along Main Street and check out some of the vendors that have joined the downtown Duluth community. Again, as a sponsor of the walk, Steverino’s restaurant will donate 10% of the profits from PKD walkers who choose to enjoy lunch at the restaurant after the walk.  Check out  Steverino's Menu  to see all of the yummy choices!

Our Walk has continually been a strong national fundraiser and we hope all Atlanta and surrounding cities of PKD patients, their friends and families will join us this year in downtown Duluth!   
 
         To register please go to 2013 Walk for PKD. 

          LIBERTY MUTUAL INSURANCE INVITATIONAL:

         DRIVING HOME A CURE FOR PKD

         Sara Brown
         Fundraising Events Manager
         Email: sarab@pkdcure.org
         Phone: 800-PKD-CURE Ext. 104



Liberty Mutual has been a long time sponsor for the Memphis “Driving Home a Cure for PKD” Golf Invitational.  A few months back, Liberty Mutual teamed up with the PKD Foundation to expand this extraordinary event  in a few select cities and we're thrilled Atlanta is one of them! To say we are excited about this opportunity is an understatement. On October 28, 2013 we will be hosting our first Liberty Mutual Insurance  “Driving home for a Cure for PKD” at the Bears Golf course in Suwannee, GA.

WANTED: Golfers seeking to play golf and raise money for a great cause!  We know that golfers look for ANY reason to play golf so why not play at our tournament and the chance to play in the finals at Pinehurst!  Now for those who don’t golf such as myself, come out and support your friends, family and the PKD Foundation.
          EVENT INFO:
          Bear's Best Atlanta
          5342 Aldeburgh Dr. 
          Suwannee, GA 30024

          Monday, Oct 28, 2013
          1:00 PM Shogun Start 
          Scramble Style Format




All inclusive entry fees include Premier Welcome Gifts, Mulligans, Contests, Boxed Lunch, Beverages, Snacks, Dinner Awards Banquet, a chance to play in the National Finals at Pinehurst Resort* and more!

$200 Per Person

$800 Per Foursome



*The qualifications for the winning foursome to play in the Liberty Mutual Insurance Invitational National Finals at Pinehurst Resort are as follows:

1. Each team must consist of 4 amateur golfers

2. The USGA Handicap Indexes of all golfers must total 43.0 or higher

3. A team may only have 1 member whose USGA Handicap Index is 8.0 or lower

4. All 4 team members may compete with USGA Handicap Indexes higher than 8.0

5. There is no maximum limit to each team's total USGA Handicap Index.


Tuesday, March 26, 2013

The Internet World of PKD (Polycystic Kidney Disease)

Today's blog is catch up in the world of Polycystic Kidney Disease.  My last blog was way back on Feb. 14th.  Work and life swept me away but now I'm heading back in to shore.

MARCH IS STILL NATIONAL KIDNEY MONTH!

We are coming into the end of National Kidney Month.  With my little swim out to sea, I really didn't get to participate much.  But its better late than never as they say.  I've read so much great information.  Not only from our own PKD Foundation and it's chapters but also from many other organizations and foundations that posted inspiring, helpful and healthful information.   In this day and age of the internet it is truly amazing the information afforded to us. I thought I'd mention some great sites we as kidney disease patients can always go to and get answers,  address our fears, show us how to be as healthy as possible and always give us hope!

PKD Foundation                                                     The American Association of Kidney Patients            

National Kidney Foundation                                   National Kidney Center 

American Kidney Fund                                           Kids Health (have a tab for kids only!)

National Kidney Disease Education Program        American Society of Nephrology

Davita Dialysis Centers                                          Fresenius Dialysis Centers

The Nephron Information Center                            Wikepedia-Chronic Kidney Disease

National Kidney and Urologic Diseases Information Clearing House (NKUDIC)

I'd like to mention here to remember there's more to National Kidney Month than just reading information about taking care of yourself.  Please take time to tell your friends and family to learn about how to take care of their own kidneys so they never have to experience kidney disease.

SO MUCH MORE ON THE NET FROM THE PKD FOUNDATION!

The above sites are all professional websites but there are so many blogs and FB pages about PKD that I've been discovering, following and reading lately, I just had to include them in today's post.  We may be the "great unknown disease" but lord do we have a great community.  Taking the time to read some of these will make you laugh and cry.  It will make you feel so close to people you've never even met.  It is truly so wonderful to feel that you're not alone.

Here are just a few.  Do you own searches and please make a comment and let us know the ones we've missed!

BLOGS                                                                  FACEBOOK PAGES

PKD Foundation Blogs (a bunch)                         PKD (Polycystic Kidney Disease) "Cystahood"

Kidney and Eyes                                                    PKD Foundation      (open)                                      

Surviving PKD                                                       The Fight to Stop PKD  (open)

PKD Blog-Life with PKD                                        Polycystic Help and Advice  (closed group)

Living with PKD                                                      Polycystic Kidney Disease (closed group)

New to PKD                                                           Polycystic Awareness Group (closed Group)

Hope you all find a family in these blogs and pages.  We have such an amazing community and we say PSHAW to not finding love, family and most of all a cure!

Marlene Stewart
Coordinator
PKD Foundation - Atlanta Chapter