Volunteering for the PKD Foundation

Some of my PKD Comrades

I recently attended the 2014 PKD Leadership Conference in Kansas City. There were 44 new volunteers this year! 44 out of 80+ leaders.  I was a little shocked by that number.  I actually asked myself, "am I crazy to volunteer?" I'm looking for a part-time job, starting a new business and want to spend time with my family and young grandson. Why am I volunteering my time?  Am I crazy or what?

I'm sure everyone who volunteers goes through a hard time and asks themselves all of the time, should I quit? A lot of the times the answer is yes. Many of our volunteers are PKD patients and can only take care of themselves. Others are just overwhelmed.

All I can say after attending the leadership conference is, emphatically no! In my pensive state of mind concerning my transitions this year, I realized that I wouldn't know what to do without my PKD Foundation comrades; these people have become my family, my support and my friends. They see my strengths and my weakness'. They see me laugh and they certainly see me cry.  No, I don't think I'll be quitting my role as the Atlanta Chapter Coordinator. Not this year.  

 I realized just how proud of myself I am. I'm so entrenched in this battle that I think no matter what is on my plate I will always be a volunteer for the PKD Foundation. Like all volunteers we have grandiose ideas. Some of them work and some of them don't. But I've learned this year we are all important because we are here. And those 44 new people? They are here to do the same.

If you're interesting in becoming more involved, check out all PKD Foundation volunteer opportunities.

Marlene Stewart
PKD Foundation - Atlanta Chapter

I Heard the News Today....

Today a family member was told she has Polycystic Kidney Disease.  Today I knew her life would become very different.  Today I even knew she would take it like a champ and believe there will be a treatment and/or cure in her lifetime.  Today I knew I couldn’t ever stop fighting for a cure or treatment.

As PKD patients who have children, we pray everyday that they won’t have it.  We pray the 50% chance is wrong.  We pray they will beat the odds.  Until we find out they didn’t.  Then the prayers and the hopes take a turn.  They turn to science, doctors, nurses, research and miracles. 

The disease doesn’t discriminate. It doesn’t choose a specific culture, gender, ethnicity or age.  So when we get the news that our son’s, daughter’s or grandchildren have been diagnosed, our hearts sink.  We realize that our prayers weren’t answered.  But as we did when we found out that we had PKD, we pick ourselves up after the initial shock.  The only difference is instead of being the learners; we now become teachers.  We teach them how to be courageous, strong and hopeful.  We educate them on all we know and how to find out the things we don’t.  We do everything in our power to make them feel better.

So yes, today I call on all to UNITE TO FIGHT and walk for PKD.  If you can’t walk, donate.  If you can’t donate, educate. Tell your friends and families about this disease that robs people’s lives of innocence, childhood, health and longevity.  Tell them we need them to pay attention.

This year’s walk in the Atlanta metro area is in downtown Duluth on Oct. 12 at 9:00 am.  For more information please go to:

Walk for PKD Atlanta

Marlene Stewart

Coordinator

PKD Foundation -Atlanta Chapter 

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.

Wow! There are so many things to present to you all I doubt I can put them all in one blog!  Since I've started this blog, I'm learning all kinds of amazing things!  It appears when you actually take time to do research on the Internet, you find all kinds of things.  I usually don't find the time to relax and just surf the Internet.  Usually I'm frantically working, paying bills or trying to answer emails.  So this has been interesting and fun for me.  

I'm catching up myself on a lot of PKD news and I am really happy to share some of these things with you all!  So let's get started!

The Flu is the worst it has been in 10 years and PKD patients on dialysis or transplanted must take extra care to keep yourself healthy! It's been a real challenge for me since I've been taking care of a sick family member who has been in the hospital for 2 weeks!  The hospital is not where you want to be when this stuff is going on.  It's quite scary for me as I feel I'm just waiting to catch something.  As you can see from my picture I'm covered up like the Masked Marauder! I have not shaken a hand in several weeks now.  Actually, I try to practice this most of the time.  

Please make sure you keep yourselves safe!  I have done some surfing and  found some sites that might be helpful.  There are many out there but here are some I felt were useful.

• I discovered a very informative article and video from the Massachusetts General Hospital Transplant Center. This site provided in depth advice and guidelines on how transplant patients can Confront the Flu and Cold Season. 

• Northwestern Memorial Hospital also provided some great information about protecting your self from the flu on their Influenza page. 

• On the CDC website there is information about the flu which includes tracking the number of cases in your state. The CDC along with other sites say stay home if you contract the flu. For immune suppressed people it is highly recommended you stay away from crowed areas and follow your normal guidelines more so than ever. 

Ok, now on to PKD news!

What's New in PKD 2013: A Live Broadcast Day of PKD Learning

Saturday, March 9, 2013
10:00 a.m. - 2:30 p.m. Central Time
(local times may vary)

This will be a fantastic day of learning.  The Atlanta Chapter would like to set this up but wants to make sure you would be interested.  Please rsvp to atlantachapter@pkdcure.org if you are interested in attending.  

A Message from the PKD Foundation's CEO

Since Gary Godsey has become CEO of the PKD Foundation, I've witnessed his tireless efforts to amp up the foundation and inspire us to keep up the hard work.  In his 2013: The Year of Hope for the PKD Foundation, a "state of the PKD Foundation" message, he catches us all up with the news in the world of PKD research, the focus of the PKD Foundation in 2013 and how vital it is to volunteer.

Cocktails for a Cure

I am beginning our plans for the 2013 Annual Cocktails for a Cure! 
This event did really last year and it was so much fun!

I will be selecting the location and date very soon.  Once I negotiate the facility the date will be set!
We hope to go to the next level for this wonderful event.  However, I can't do it alone.  Now is the time to let me know if you can help with this event!  I am building my committees right now! Please email me at atlantachapter@pkdcure.org or pkdatlantachapter@gmail.com

PKD Heath Notes by Kelly Welsh

I just love reading Kelly Welsh's blog, Health Notes.  Kelly is a renal dietician and full of wonderful information for PKD patients in ALL stages.  The current blog is about the causes of high blood pressure but her blog is always filled with so many healthy and nutritious information and recipes!  I urge everyone to read it.  Just click on the link above and get started living a healthier 2013!

2013 PKD Foundation Leadership Conference

As previously stated in my first blog, the PKD Foundation will be holding its 2013 Leadership Conference for all Coordinators Feb. 22-24.  I will be participating in the conference representing the Atlanta Chapter.  If there are any concerns or issues you would like me to present to the Foundation, I ask that you reach out to me before the conference.  You can post comments on this blog or email me at atlantachapter@pkdcure.org, or pkdatlantachapter@gmail.com.

Run for PKD

Our Atlanta Chapter no longer has a run connected with our annual walk.  We decided that we needed to focus more on our walk.  However, if you'd like to start a Run for PKD event in conjunction with our walk, please go to: Run for PKD to learn more about it.

As I muddle through as a beginner blogger I continue to learn how to do this better and have jotted down so many things that would be fantastic for us all to explore together.  I am very excited to bring them to fruition.  Again, I welcome any ideas, stories, articles and other blogs to link to on this site.  Let's all unite for a cure to END PKD!

"Some days there won't be a song in your heart. Sing anyway."

-Emory Austin

Marlene Stewart
Atlanta Chapter Coordinator
1.25.13