I was standing with my back toward the wall at Starbucks in the Sacramento International Airport, waiting for my tall, iced, green tea unsweetened with two Splenda Sweeteners. I was wearing a mask to protect myself from germs, and a sweatshirt I had created when I rode on the Donate Life Float in 2011. It has a picture of my organ donor on the front and the words, ‘I love my living donor,’ ‘END PKD’ down one sleeve, ‘Donate Life’ down the other sleeve and the 2011 Donate Life logo on the back with the words, ‘Transplantation Works, Kidney Recipient.’ I noticed the woman to my right was looking at me. Wearing a mask attracts attention so I didn’t think anything of it. She asked, “Did you receive a kidney transplant?” I said, “Yes, I did. Thank you for asking.” We chatted for a few minutes and discovered that a friend of hers has PKD and received a transplant, too.
I was grateful I chose to wear my “awareness” shirt. I figured with wearing a mask, it was an opportunity to raise awareness and it did just that. I proceeded back to my gate as I waited to board a plane on Feb. 19 to head to Kansas City for the PKD Foundation Leadership Conference. I have been volunteering for the PKD Foundation since 2004 and there were a lot of things I was looking forward to, like seeing old friends and making new acquaintances, learning new information about the Foundation and PKD and meeting the staff.
I was especially looking forward to seeing Julia Adams, as she and I were flying to Kansas City together. I met Julia and her daughter briefly in 2010 at the PKD National Convention. Julia reached out to me awhile ago via email. She and I exchanged many emails about her daughter’s health, everything their family was enduring leading up to her daughter’s transplant and how their family was doing post-transplant. Julia’s husband gave his kidney to their daughter, Elizabeth. There are a lot of unknowns and concerns that occur along our path with PKD and I was grateful to talk to Julia as she and her family went through this difficult and miraculous time in their lives. When I saw Julia at the airport, we instantly embraced one another and talked from that moment the entire way to Kansas City. It was so wonderful to be together.
As soon as the conference began and I saw familiar faces and old friends that I haven’t seen in many years (like Jeff Robertson, Executive Director of the PKD Foundation of Canada), it felt like a family reunion. Many of us are friends on Facebook and communicate via social media, however it was so nice to be able to spend time together in person.
I am grateful that my body was healthy enough and cooperated for me to attend the PKD Leadership Conference. It was full of valuable information and amazing people. As I sat in the conference room Saturday morning, I looked around the room with great comfort knowing that all of the PKD Foundation employees and volunteers are rallying together to advocate for PKD, spread awareness and hopefully discover a treatment and or cure. Now that is HOPE!
This was a weekend packed with valuable information to help keep the Chapter and Walk Coordinators as informed and up-to-date as possible. PKD Foundation staff members spoke and interacted with attendees. The staff acknowledged that although we do not have a famous spokesperson, we are all famous in our own right. We are famous to our family, friends and loved ones and it is important that we use our voices to raise awareness. They discussed advocacy events that take place in Washington, D.C. and events like the upcoming Gratitude Benefit this Saturday in Dallas, Texas. Also, that the 2016 PKD National Convention will be in in Orlando, FL. I had the pleasure of going to dinner with the Volunteer Advisory Committee, a few staff members, and Kriste Lewis, NFL Cheerleader for the New Orleans Saints. Kriste is a 40-year-old mother of two who has PKD and was a guest speaker at the conference. It was encouraging to be surrounded by such dedicated individuals who are helping each and every one of us suffering from PKD. We also had the opportunity to hear Dr. Terry Watnick provide a PKD science update.
It was eye-opening and encouraging to see all of the work the PKD Foundation is doing. The staff is very knowledgeable and enthusiastic in their roles. It was also enlightening to meet all of the volunteers across the U.S. and learn what they are doing and to hear of their accomplishments. There was a luncheon dedicated to acknowledging and awarding some of the Chapters, their annual walks, and the individuals that lead the Chapters and fundraising events.
On the first morning I was so excited to wake up to start my day and see everyone. It was a great feeling. This weekend was rejuvenating for my soul. As a PKD patient, it was comforting to learn everything that the PKD Foundation is doing and how hard the staff works. It was inspiring to learn of the dedication and accomplishments of the Chapter and Walk Coordinators. Most of all it was comforting to be surrounded by kindred spirits; by people who truly get this disease. Those that share compassion and the determination to beat PKD. It was an opportunity where everyone could talk candidly about what they are enduring and to know they are not alone. If you are not involved in your local Chapter, I encourage you to reach out and connect with others going through what you are. Getting involved with the PKD Foundation has been a source of therapy and has led me to the life-long friends I have today, like Darien and Josie DaCosta.
There are moments in life when you’re in awe by the kindness of others. This happened to me at the conference. I met Darien and Josie at a PKD National Convention in 2009. I shared my story at the event and they spoke to me after my speech. Last weekend, they gave me an extraordinary gift. Josie is an amazing artist and created a collage portrait of me. Josie said, “My gift is to say ‘thank you’ for all that you do.” I am grateful for their friendship and this priceless gift that I will treasure forever. It will be a constant reminder that PKD Will Not Beat Me and will fuel my passion to keep sharing my story and help to provide inspiration, education and hope to others.
The fun continued on our travels home from Kansas City. I flew home with the Sacramento Chapter and Walk Coordinator, Julia Adams and Larianne Awbrey Austin. During our layover, the pilot made his way to the very back of the plane and we wound up sharing Josie’s amazing work of art to the pilot and two female attendants. We informed them what PKD is and told them about my blog. The pilot asked for my autograph, they were extremely kind to us and we all shared many laughs. They were an awesome crew and it was an amazing moment of spreading awareness of PKD.
From the flight out and back to everything in between, I am reminded of the importance to use our voice to spread awareness and help support others. After spending time with old friends, making new ones and meeting the PKD Foundation staff, I am invigorated and proud to be a part of the PKD family. We are a powerful family, full of strong and loving people, who should be proud of who we are and what we are doing to help our cause. All of us exemplify the power of what we can accomplish as individuals and together. We all share a special bond. We are all battling this same fight, whether it is ourselves, or a loved one or a friend enduring PKD. We are all walking this path hand-in-hand, heart-to-heart.
If you attended the PKD Leadership Conference, please share your experiences and what you learned at the event. If you did not attend, are you involved in a local Chapter and/or how do you use your voice to spread awareness and help others? What gives you hope?
Your account of the PKD Leadership Conference was heartfelt, and I am sure it is shared by so many of us that were in attendance. I always find the Conference to be empowering and emotionally charged for me.
As a Volunteer Chapter Coordinator, it is so consistently motivating to talk to other Volunteer Coordinators and find out what works for their Chapter. Sharing ideas and experiences and knowing there are others that have similar challenges and triumphs.
There is information that I receive that is invaluable, and I am able to bring home that information to share with my family, friends, and Chapter. Information that can be as big as progress that is being made in the area of research to something as small as the fact that you’re able to drink green tea when I was told that it would interact with my medication. I know that even six years post-transplant I still have questions to ask.
I am grateful to The Foundation for the opportunity to attend the Leadership Conference to network and learn! I am grateful for the work that they do and being able to be a part of it!
I am so thankful to hear how much you gained from the Leadership Conference, in knowledge and support. I too am grateful to The PKD Foundation for the opportunity to attend their wonderful event. Thank you for sharing your sentiments and for all of the work you are doing to help those affected by PKD, especially in your community in Pittsburgh, PA.
Hi – your narrative of your trip is wonderful. The message is about a very successful transplant without problems associated with rejection. What’s missing is a narrative discussing how medical research in slowing down or halting the progress of the disease. There are research animals which have expressed the PKD allele yet there has not been any significant progress in reversing cyst formation. I congratulate you on finding a donor and your successful transplant. Let’s all work towards focusing medical research to step up efforts to slow down the incremental progression of cysts.
Thank you for your kind sentiments in regards to my transplant. I did face rejection right after my transplant. I was fortunate that it was caught in time and they were able to prevent the kidney from fully rejecting.
Next week’s post will focus on medical research and the announcement made yesterday, that a treatment for ADPKD patients has been approved in Canada. It was announced that Health Canada approved JINARC™, the first treatment available to slow the progression of the disease.
Wonderful blog about a wonderful weekend, full of love , sharing, friendship and learning. PKD Warriors united
Thank you so much Jan! I wish you could have been there! xoxo
The Leadership Conference was an amazing experience, and I am so thankful that I was able to attend. As I am a new coordinator this year, I was somewhat overwhelmed with the wealth of information presented, but I have no doubt that they will be there to help me every step of the way. Having the opportunity to meet so many others from across the country and to connect with them and create a network of friends that share the passion to find a treatment and a cure is priceless. I am so energized for the journey ahead that I will be taking with our chapter! Oh, and it was pretty awesome to meet you Valen…I’m kind of in awe of you!
Aww, you are the sweetest! Thank you! It was wonderful to meet you! I am so excited that you are a new coordinator and to hear how much you enjoyed the conference. I too am thankful for the opportunity to attend, soak in all of the information and to meet so many others, like yourself, from across the country. Good luck on your new venture of being a coordinator and know that you have tons of support from all of us. Hugs!