Wednesday, March 19, 2014

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

Wednesday, December 11, 2013

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:

Marlene Stewart
PKD Foundation-Atlanta Chapter Coordinator