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

Why I Fight for PKD

I know this blogs main goal is to provide information for our chapter but I as I've previous stated, I think it's a place to share our stories, our experiences and trials and tribulations. Today I would like to share about my personal trials and tribulations and why I fight for PKD.  

I am in Albuquerque New Mexico taking care of my sister in the hospital as she fights for her life.  Barbara has been on dialysis for 12+ years.  She's always had some difficulties that have made her struggles with PKD more intense than mine.  As we all know it is a very individual disease. Some do better than others.  She has experienced a lot of difficulties in her journey with PKD but she has also been one of the biggest fighters against this disease than anyone I've ever seen.  We all have our heroes don't we?

I came here on Sunday expecting to find her very ill physically and mentally.  However when she heard that my twin and I were coming to see her, she perked up right away.  Although her spirit is high and she has been eating better, I wish I could say she's getting better but she's not.  I wish it were that easy.  The doctor's have been really great with her care but there's only so much that can be done for her now. 

We all have times where we turn to our PKD family for support and understanding.  We know we are not alone.  We know that there are people who are experiencing some of the same things and it provides a calm for us.  It is for this reason most of all that I became a chapter coordinator and involved with PKD.  As we all know, 9 times out of 10 when we tell people that we have PKD, we get the "PKD what?" response.  It is for myself, my family, and for my PKD comrades that I take the opportunity to tell those people exactly what PKD is and how many people it affects.  In fact the other day, I received a call asking for a donation.  I told this person on the phone I would be glad to give them a donation but they had to listen to me about my foundation first.  I know,  a little quirky but I take the opportunity when I can to bring awareness.  This was in fact a charity I like to support but I desperately wanted them to know about my disease also and perhaps one day they would support ours. The person receiving my unsolicited lecture was somewhat annoyed at first but as I told her about our foundation she was truly interested in how she could participate in a walk and how to find one.  Will she do that walk? I can't say.  But now I have made her aware of PKD and the chances of her walking are far greater now than before.   

This is how my mind works now. This is how I fight for PKD every single day.  I take any moment I can to tell people about our "secret society."  I want to make it less and less a secret.  I wear my pins, I carry my cards,  I plead with them to go to the website and learn more about it.  I warn them the picture of a PKD kidney isn't pretty but I need them to be shocked.  

I know it's hard for some to talk about PKD and that too is a very individual decision but as a PKD patient I need to do this for myself and for my family and PKD friends.  I want to be that individual who says I made a difference in the fight for PKD.  I hope you do too.  

Marlene Stewart 
PKD Foundation - Atlanta Chapter Coordinator 

Happy New Year!

It's a New Year and as a PKD patient, I hold high hopes and dreams of finding better treatments and of course a cure for PKD.  In 2012 PKD patients had some great news. One in particular was the results from the Tolvaptan study.  The study shows that Tolvaptan does in fact slow down the growth of the cysts on our kidneys.

We learned that Drug Repurposing has become a huge part of research for the PKD Foundation.  With our continued fight for a cure through awareness and fundraising, I feel strong that one day soon great things will change this horrific disease affecting PKD patients and their loved ones. As I mentioned in my previous blog, my goal is to share with you anything from the PKD Foundation and any other resources I find.  Julia Roberts and Michelle Karl will also continue in their fight for a cure on the ARKPD side of this disease.  But please do not hesitate to post things on FaceBook and/or let me know in the comments section about things you've heard about or read.

To make things happen like drug repurposing and research, we have a lot of things to do as a chapter and a foundation this year! I am about to embark on the Cocktails for a Cure event and would love to have my volunteers from last year step up and anyone else who would like to become involved in this important fundraiser.  We want it to be bigger and better than last year and I believe whole heartily we can do it!  Let me know if you'd like to be a part by emailing me on FB or at atlantachapter@pkdcure.org.

Karyn Waxman in Memphis who created a very successful annual golf tournament has high hopes of finding a person in the Atlanta area who not only loves to play golf but would like to be involved with a golf tournament!  I can put that person in touch with her also.

Finally, the leadership conference is coming up at the end of February and I'd love to hear about some concerns, questions, ideas and opinions you may feel is important for me as the chapter leader to bring to the forefront at the meeting.  This is the best place for your ideas to be presented so DON'T BE SHY!

Again, Happy New Year and let's do great things together as a chapter and as people who have been affected by PKD far too long!

Marlene Stewart
Chapter Coordinator