The Youth of PKD

The PKD Foundation's website is such a great tool and is the source of many of my blogs. There's information about the disease itself, research being done, news about and from the PKD Foundation, where to look for doctors, how you can volunteer etc.  As a chapter coordinator I try and go to the website several times a week just to navigate around the site and make sure I'm up to date and turning out great news from the foundation to the Atlanta chapter.

I may not be able to surf the entire website each time but I always make sure I read "Voices of PKD,"  which is always so inspiring!  The featured story currently on "Voices of PKD" is about a young girl named Kerilyn.

 Kerilyn was diagnosed with PKD at age 13.  Her story talks about the abrupt changes she had to mak in her lifestyle. She no longer could do what "normal" teens do at age 13. Mostly she no longer could play the sports she so dearly loved. Kerilyn decided to make the most of her situation and as you read her story, you'll learn about a young lady who made great choices and decisions after being diagnosed!

A youth with PKD faces different challenges than an adult with PKD. Living with PKD as a teen makes those challenges even more difficult.  I urge young people with PKD to read Kerilyn's story and reach out to their peers through the foundation.  They will find life long friends who understand and support you and you'll do the same for them!

I don't know Kerilyn but after reading her story, I was so proud of her.


Click here to read Kerilyn's Story.

To find people to connect with, please contact the PKD Foundation at 1.800.pkdcure or visit the website at:

www.pkdcure.org.

Marlene Stewart
PKD Foundation-Atlanta Chapter Coordinator

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.

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

WHAT'S NEW WITH PKD?

Hello Atlanta Chapter Members!

I remember when I first learned that I had PKD and asked the doctor what that meant.  All he said was "You have cysts on your kidneys and just have to live with it!" I really didn't think about it again for almost 10 years having no idea what PKD was and how my future would be affected.  It wasn't until moving to Atlanta and being told by a doctor in a routine visit the reality of the disease.  She suggested I see a nephrologist immediately.  I remember thinking how did this happen? How does one not understand the nature of their illness? It occurred to me that not only was my doctor uninformed but also the Internet was still in it's early stages and getting information and education about the disease wasn't so easy. 

As I did begin to educate myself, the sense of empowerment was overwhelming.  There was no way to stop this disease. However, the least I could do was face it with facts, explore research being done and learn how to keep myself healthy as long as possible. I wasn't aware of the PKD Foundation's Chapter in Atlanta until someone at the transplant center told me about it. At that time I was almost at end stage renal failure. Oh but what a joy! Julia Roberts was fantastic with the educational meetings and meeting people who had many of the same feelings and concerns was emotionally gratifying. The realization of how important it was to understand everything about this disease and what was going on in the PKD world hit me like a rock.  

This disease is very individual as far as symptoms and progression. There are things you can do and can't do. However, one of the things you can do is educate yourself!  Had I educated myself earlier, my despair would have been much less. 

This is why I once again would like to bring attention to a wonderful educational opportunity for PKD patients to learn all of the news and great things happening in the world of PKD.  On March 9, 2013 there will be an all day live broadcast from the Kidney Institute at the University of Kansas Medical Center!  

PKD experts will provide the latest information in PKD research, clinical trials, our Accelerating Treatments to Patients initiative and more. There will also be opportunities to submit questions during the event.  

I will host the Atlanta Chapter's broadcast at my home for this wonderful day of education and hope! If you would like to come to my house for this event, you can email me at atlantachapter@pkdcure.org. 

Below are the experts participating and their topics:

Dr. Jared Grantham, Opening Remarks & Clinical Trials

University Distinguished Professor and Kidney Institute Director Emeritus
Department of Biochemistry and Molecular Biology

Department of Internal Medicine-Harry Statland Professor of Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Darren Wallace,  PKD Tissue Donation
Associate Professor
Department of Internal Medicine-Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Jill Pannetta, CTAP & Drug Repurposing

Chief Scientific Officer
PKD Foundation 

Dr. Connie Wang, Clinical Trials

Assistant Professor
Department of Internal Medicine-Divison of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

Dr. James Calvet, PKD Research

Professor
Department of Biochemistry and Molecular Biology
University of Kansas Medical Center, Kidney Institute 

Dr. Alan Yu, Closing Remarks
Professor, Director
Department of Internal Medicine- Division of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

For a more information about this event, please go to:   www.pkdcure.org/whats-new-with-pkd. 

I hope to see you on March 9th! 

Marlene Stewart

PKD Foundation - Atlanta Chapter Coordinator

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