PKD Connection Blog

Chapters

Local volunteer leader gives an inside look at PKD Foundation Chapters

Erin (left) and fellow volunteers at the 2017 Atlanta Walk for PKD

My name is Erin Burden and I live in Metro Atlanta with my husband, Christopher, and our three children. We first learned of PKD when my oldest daughter’s ultrasound revealed some kidney abnormalities in utero. Since she is a fraternal twin, I was having scans regularly towards the end of my pregnancy. After our twins were born in 2010, we went for more testing and my daughter was then diagnosed by a pediatric nephrologist. PKD does not run in our families, so it was through the genetic testing process (which we were fortunate to have insurance cover) that we learned she had a spontaneous gene mutation.

I had never heard of PKD, but immediately felt a need to help as much as I could. I quickly became involved with the PKD Foundation’s Connecticut Chapter by supporting their annual Walk for PKD through media relations outreach. My family and I then moved down south and I decided to get involved in the Atlanta Chapter. After a few years, the PKD Foundation asked if I would be interested in serving as volunteer Chapter Coordinator. I was a bit hesitant at first, given my husband and I work full-time and I was worried about the time commitment. However, I have found that if you truly have a passion for something, you will find a way to make it work!

Dr. Rahbari-Oskoui of Emory University School of Medicine presents at an Atlanta Chapter education meeting

In the last year, I believe we have started to gain some great momentum with our Chapter. Part of this is making our PKD community aware of our efforts through regular communication via email and social media. Additionally, we’re engaging members by ensuring we have a range of topics they are interested in learning about through our educational meetings. We’re also providing opportunities to support fundraising efforts and offering support options for the recently diagnosed.

This year, we’ve held educational meetings on nutrition and PKD advancements with the approval of tolvaptan (brand name JYNARQUE™), the first FDA-approved treatment for ADPKD. We also partnered with Modern Hops, a craft beer distributor, on the first “Day of the Juice” charity beer festival, where all proceeds went to the PKD Foundation and Georgia Transplant Foundation. Looking ahead, we’re planning to host a meditation and yoga session one morning in the fall so members can work on the importance of relaxation and wellness! We also have our annual Atlanta Walk for PKD on Saturday, Oct. 20.  We’d love to see new faces, but even if members can’t make it, they can still raise money.

Erin with her daughter and mother at the Walk for PKD

It’s been such a pleasure meeting new PKD patients and their families over the past several years. I have been inspired countless times through my volunteer work with the Foundation and I believe that my efforts, even in a small way, help ensure a better future for my daughter. I also have high hopes for the growth of our Chapter, but I do need more volunteers, and I’m sure I’m not the only one! If you are interested in volunteering on a regular basis, or just have a few hours to give, consider reaching out to your local Chapter and see how you can get involved.

If you’re interested in volunteering with your local PKD Foundation Chapter, sign up here to get involved!

Comments

  1. Phyllis Browning says:

    Erin, my friend and I have PKD in our families. I am post transplant and she is on dialysis. We live in the Augusta area and would like to get a group locally to help those in this area with a support group to discuss problems and help guide them through the life of sickness. Please contact us at phyllisb1947@att.net.

    Phyllis Browning

Leave a Reply

Your email address will not be published. Required fields are marked *