I recently had the opportunity to attend the National PKD Convention that was held in Kansas City, MO. It was amazing to meet all the people whom I have connected with on Facebook and meet the Scientists who are behind all of the research we fundraise for. It was touching to hear everyone’s stories why they were there and why they fundraise. All of the research for PKD would not be made possible without all the efforts that we make to raise funds. These efforts truly make a difference in making medical research breakthroughs.
It was so great being in the same room with people who had the same passion to help find a cure for PKD. Surprisingly, there are 300,000 Americans living with PKD, yet there were only 300 people who attended. The convention offered opportunities to learn more about the disease to, nutrition, to dealing with the disease. The doctors and scientists who attended the event, are the most knowledgable experts there are in the PKD community.
It was so amazing to see that even those living with PKD; they are not going to let PKD win. They are putting their efforts towards something positive to make a difference not only for themselves, but for others as well. It is very empowering being with people who all have the same vision, to one day put an end to PKD. Even though our son is not here, we are still apart of the PKD family.
Whether a person has a child pass away or receives a new life altering diagnosis, there is a grieving process that occurs in both situations. The life that was to be is grieved because life will never be the same again. Everyone deals with life tragedy, devastation and loss differently, and that is ok. When pain, devastation or loss is poured into something positive, hope becomes alive and lives are changed.
At the convention, I had the opportunity to meet a lot of wonderful people. Julia Roberts and Michele Karl are two women who really inspire me to be a better person and whom really make a huge impact in the PKD community. Their compassion, efforts and drive are really making a difference not only in their own lives, but the PKD Parents as well. Both women have children diagnosed with PKD, but they do not let PKD end their lives, they put their efforts into ending PKD.
This year at the convention, a Memorial quilt was made in honor of all the ARPKD babies who have passed away; which was handmade by Julia Roberts. It was displayed for everyone to see. Our babies are not forgotten by the PKD community. Julia Roberts writes about her journey taking care of children with special needs. To learn more about how Julia makes a difference visit her blog at www.supportforspecialneeds.com
What is your passion? What drives you to be positive and/or make a difference? Post your comments here.
Go to: http://www.crowdrise.com/RunforPKD2014NYCMarathon/fundraiser/heathergillis