I have been a PKD Foundation Chapter member for 14 years. I have been to Washington D.C. three times representing kidney patients from California on a number of fronts, both with the PKD Foundation and with NKF. But I'm getting tired now. I invite you younger folks to pick up the reins. Let's continue to do clinical trials and find a cure. When I first learned I had PKD it was 1982 after my father died from complications of PKD. I was told there'd be a cure in 20 years. Since then I lost my youngest brother to PKD. Through my volunteer work I have met hundreds of other people whose parents, children, aunts and uncles, spouses and partners have died from PKD complications. Too many people have suffered and died from PKD, and I have seen it first hand in my work through Kidney Community Education.
We need to continue to partner with businesses to accelerate drug development, and research. I myself was blessed to receive a living donor transplant in 2005, from Sally Reif, a living altruistic donor. Sally, a mother of three and a member of the US National Guard. We found each other online through MatchingDonors.com. My brother Dave had a living donor transplant three months before me, so I had a guide. I am grateful every day for what Sally did for me. It opened up a whole new chapter in my life, one in which I have been able to help other people see their transplant day. Since my transplant I have spent thousands of hours helping others in need of a transplant get the information they need. Quite a few have reached their transplant day! Since his transplant, my brother David created MatchGrid software for paired donation currently in use by several hospitals. His collaboration with hospitals has helped to save many lives. If you or a loved one are affected by PKD, please join us. Donate money. Go to Capitol Hill. Contact your legislators. Enlist your contacts. We need more of you to get involved. We need all of us to make it happen.
Recipient of a Gift of Life
I was diagnosed with PKD in my early 30s. I had a young family and a vibrant career. I was on the career fast track, and health and youth were important to those around me. When I was diagnosed, my doctor told me PKD wouldn't be a problem until later in life. Given his view of privacy in healthcare at the time, he suggested I keep my condition private. I grew up in a family where issues were "kept in the house," so it was easy for me to keep it a secret.
I went a long time only telling select family and friends about my PKD. As my health deteriorated, my career was accelerating almost in an inverse relationship to my health. By the time my kidneys actually failed, I had an executive role at a major financial services firm.
Things did work out along the way. I was fortunate to have a successful transplant, and am now in my 50s. I know circumstances with pre-existing conditions and privacy are different now, but I did what worked for me at the time. I would not change the way I handled it given my particular circumstances.
Felipe Saint-Martin - New York
I am PKD, this is my relationship with the disease. It's written on my genes as much as everything. By the time I was eight years old, I figured it out that my mother had the same thing that my grandmother died from. The thought of my mother's death became a huge weight in my life, I thought of it all the time. When I was 15 years old, I lost my mother from heart attack during a dialysis session. I was supposed to visit her the day before she died but I missed the ride with my father.
I had been with my mom at every stage of her disease, from dialysis to a transplant attempt. I was constantly anxious and I wanted to be around her all the time. I couldn't focus on anything and I was never a good student. By 15 I was alone, I had to become my own mentor.
Suffering the full affects of PKD is something beyond imaginable for someone that doesn't have this disease. It's not just a disease. It's a destiny that follows and predicts the outcome of anyone from a family that carries the disease.
Heather Gillis - Phoenix
When a child passes away, there are no words that can take away the pain of a parent's loss. It is unimaginable to think of a child dying, but in many people's lives this is their reality, especially in those affected with autosomal recessive polycystic kidney disease (ARPKD), which affects 1 in 20,000 children.
This became a reality in the lives of our family three years ago, when our son Bowen lost the fight to this disease after 13 days. We had no idea that Bowen was going to be born with ARPKD. After he passed away, we were devastated, heartbroken and left with a lot of questions unanswered. Even though we were only able to hold Bowen in our arms for a short while, he will hold a place in our hearts forever. Bowen may not physically be here with us, but the love we have for him still exists.
Scott Peppet - Boulder, Colo.
My mother died from PKD complications at 61, after having two kidney transplants. Her kidneys failed around age 50, and she had a very rough decade after that. She was constantly in and out of the hospital. I was in my 20s, and it was very hard to watch her suffer. I definitely realized that neither dialysis nor transplantation is a "cure" for PKD. During that time, also I found out I had inherited PKD.
My parents were PKD Foundation donors, and after my mom died, I became involved as a volunteer, and later joined the Board of Trustees, eventually serving as vice chair and chair.
Until I got involved in the PKD Foundation, I didn't know anyone else with PKD except myself and my mom. Through the Walk for PKD, the National Convention, and other Foundation events, I met many people who have PKD or have it in their family. It was a very powerful experience to meet others living with PKD—and either doing well, which was inspirational, or doing poorly, which was motivating.
I give to the PKD Foundation because I want to help the scientific community find an effective treatment. This disease causes a lot of suffering. Dialysis and transplantation work for some, but they are not great options for everyone. I give for myself, my family, and all PKD patients, so that we can find ways to limit the harms of this disease.
I know I am making a difference by giving to the Foundation. In 2000 when my mom died, there were no clinical studies for PKD. I myself am in the tolvaptan trial right now, and in the last decade there have been dozens of clinical studies related to PKD. The PKD Foundation plays a critical role in moving this science forward. I hope people recognize the progress the Foundation has made and the role it has played in putting this disease on the map. That is why I make giving to the PKD Foundation a priority.
Rachel Kunstadt - New York
Dana Aber performs at Broadway Sings for PKD.
My father has PKD, and in the summer of 2012, he was dying from complications of PKD. My dad had been on dialysis since 1999 and it took a toll on his heart. He was waiting for a transplant but things looked bleak. He was in and out of the hospital and it was a hard time for me and my family.
In an effort to cope with the reality of losing my dad and to do something positive, I decided to use my profession as a musical theatre writer and producer to spread awareness and raise money for the PKD Foundation. I organized the first Broadway Sings for PKD in 2012, and eight days before the concert, we got the call about my dad's new heart! After heart and kidney transplants, he is much better health.
Broadway Sings for PKD is a concert that features Broadway performers singing new musical theatre songs by emerging musical theatre writers. With three total concerts so far, we have raised close to $5,000 to raise funds for the PKD Foundation.
It means a lot to me to raise money for PKD. The PKD Foundation has been a support system for me and my family, especially during my father's transplants and his recovery. PKD is a disease that affects so many people, but so few know about it. Raising money for the PKD Foundation means that I'm doing my part to help end this terrible disease and educate others about it.
Sean Kenny - Freehold, N.J.
My son Patrick has ARPKD, he was diagnosed at 20 weeks during a sonogram. I didn't know what PKD was at the time. Like most people, you don't know about it until it happens to you or a loved one. Patrick is considered "the miracle baby" after what we were told was going to happen shortly after his birth. To this day, people say that is the boy we were praying for! Patrick is now 14-years-old and like any other kid, big and strong. My wife Maureen looked for information about PKD and found the PKD Foundation. Through the Foundation, we tried to learn as much as we could about PKD. After regularly receiving communications from the Foundation, I thought it was time to step up and help the people who are helping people with PKD. In 2014, we will have our Third Annual PKD Foundation Paddy Plunge.
The idea for this came when my nephews and I went to support a plunge for another cause, but when we got there it was more expensive than what I had on me. We decided to just go down a few blocks and dive on our own. On the way home, I thought "why not plunge for PKD?" The following year, we did just that. We always hold it the Saturday before Superbowl Sunday, so it will be on Feb. 2 this year.
The feeling of raising money for PKD in the way that we do makes it fun and well worth it, a little sacrifice for a huge reward. People talk about and remember our event since it is unique. I wish I had a dollar for every person that said they have always wanted to try a plunge. It is a great way to bring family and friends together to have some laughs and funny memories while raising money for a great cause.
Cyrilla Haverkamp - Loveland, Colo.
My grandmother died in 1961 at the age of 56 from Polycystic Kidney Disease and in June of 2013, I turned 56. As a way to honor her memory and the many family members who have died from PKD I decided to hike the Camino de Santiago. The Camino de Santiago or "The Way of Saint James" is a pilgrimage to the Cathedral of Santiago de Compostela in northwestern Spain. Legend has it that the remains of the apostle Saint James lie buried in the Cathedral. The Camino has existed as a pilgrimage for over 1000 years. We chose to hike the Camino Frances. The Camino Frances starts in St. Jean Pied de Port, France and ends 500 miles later in Santiago De Compostela.
My husband Randy and I started our hike at St. Jean Pied de Port, France on September 21st and spent our first day crossing over the Pyrenees into Roncesvalles, Spain. One of the most beautiful sites we hiked past on that first day was the Vierge d'Orisson near the top of the Pyrenees.
Read about Cyrilla's hike
Zac Haas - Albuquerque, N.M.
My daughter Anabel was diagnosed with PKD around 20 weeks gestation. We were taken aback regarding the possibility of a serious, life-altering condition. Many emotions went through our minds and affected my entire family emotionally and physically.
Anabel is now one year old and thriving.
For her first birthday, we invited 50 friends and family members to celebrate with us. Instead of bringing gifts, we asked our guests for donations to the PKD Foundation. We wanted to encourage a gift that could change the lives of many people forever instead of opening gifts that would only last a short period. Anabel already has an abundance of toys and clothes from her older sister and grandparents who spoil her!
We raised nearly $2,000 for the PKD Foundation. We are fortunate to be able to have the best case scenario with one normal kidney and one affected by PKD. It is important to us to raise money for those not dealing with the best case scenario and raise funds for the PKD Foundation to find treatments and a cure.
Cheryl Bost - FDA Advisory Hearing
My name is Cheryl Bost, I'm 46 and I am currently in stage four renal failure due to autosomal dominant polycystic kidney disease (PKD). I'm here before you today to share my family's story and ask that you approve Otsuka's request to move tolvaptan forward as another avenue for families suffering with PKD.
Read Cheryl's testimony
Gayle Sellars - St. John, Ind.
Gayle Sellars passed away in March of 2013, leaving behind a strong legacy of advocacy and passion for finding treatments and a cure for polycystic kidney disease (PKD).
Gayle first found out about PKD when her mother, Marilyn Zubo, was diagnosed with autosomal dominant PKD (ADPKD) while Gayle was 19. Gayle found out she too had PKD when she was 24 years old. "Gayle was always a very smart, determined and forceful person," Marilyn said. "She was a champion for our family and for those who live with the challenges of PKD everyday."
Marilyn had a transplant 10 years ago and is in good health. But, Gayle knew life would be better for her mother if she didn't have to worry about insurance and the cost of anti-rejection drugs. Gayle's passion inspired her to attend United on the Hill for the first time in 2009 and she attended every year after, fighting hard to inform representatives of the impact PKD has not only on the individual, but the family as well. It was very important to Gayle to find a cure for PKD, not only for herself, but for her mother, daughters, brothers, nieces, nephews and for all those who suffer from this disease. She felt very strongly that in order to gain more funding for PKD she needed to inform and educate our members of Congress about PKD through United on the Hill.
Last year, Gayle attended United on the Hill with her husband Ronnie and teenage daughters Allison and Jessica. Through her willingness to take action, Gayle showed her daughters how they too can make a difference through her trip to the Hill to raise awareness and advocate for PKD.
Connie Lolli, a longtime friend of Gayle's, attended United on the Hill with her in 2010, and it was a trip she will never forget. "I have seen Gayle deal with PKD for all of these years, however it wasn't until she asked me to attend United on the Hill with her that I began to grasp what exactly she was dealing with and fighting for," Connie said. "I hope that people will remember Gayle not for her disease but for the extraordinary woman she was. She has been a great role model for her daughters as well as mine."
Dale Filsell - San Antonio
I was diagnosed with PKD in 2005 after an MRI on my back. Once I found out PKD was genetic, my mom and sister were tested and diagnosed as well. My grandmother died from PKD, although no one knew the exact kidney complication at the time. My Uncle Victor died two years later, awaiting a kidney transplant after undergoing a radical nephrectomy and subsequent dialysis. After 21 years in the military, I am now on my ninth assignment, working at Lackland-Kelly Air Force Base in San Antonio. I support the PKD Foundation because we need an organization to fight for PKD and bring as much exposure to this disease as possible. I support the Foundation's continued fight on Capitol Hill to get research funding so we can discover treatments and a cure for this disease.
Carol Mainolfi - Lutherville, Md.
I have PKD, as does my teenage son. I spent several years on dialysis and recently received a kidney transplant through the paired exchange program at the University of Maryland Medical Center after a failed transplant in November 2011. I believe my story and experiences can help others by educating them on the choices and resources that are available to them while dealing with the illness, including the financial options as well. I am attending United on the Hill this year because I feel that it is important to reach out to our senators and representatives so that they may better understand the issues faced by generations of PKD families.
Jana Cox - Alabaster, Ala.
I volunteer for the PKD Foundation not only for my daughter who has autosomal recessive PKD (ARPKD), but all of the children out there that have this terrible disease. A relatively rare form of PKD, ARPKD affects approximately 1 in 20,000 children, and often causes death in the first month of life. It is my hope that one day there will be a cure for ARPKD so that no other child will have to experience what my child has had to endure. If my efforts in volunteering can help make a positive change in the future of one child and their family, my time will have been well spent.
John Jennings - Attleboro, Mass.
I am a National Guardsman and Army veteran and had just finished two deployments in Saudi Arabia when I was diagnosed with PKD in 1995. At the time, my only symptom was high blood pressure. Eleven years later, those symptoms began to worsen. I was slated to deploy to Afghanistan with the National Guard, but I couldn't go due to low kidney function. In 2011, I went on the kidney transplant list and began preparing for dialysis. On November 7, I received a kidney transplant, avoiding dialysis by a week and-a-half. Currently, dialysis and kidney transplantation are the only treatment options for PKD. Our hope is that while research continues on PKD, that we can help get the word out about all the people in dire need of transplants. We hope that by sharing our story and our time that we can help many other families.
Nicole Harr - Overland Park, Kan.
Eight years ago, I joined the PKD Foundation's fight to end PKD by becoming a volunteer. I was looking for a way to raise money for research and I found the most amazing people in Kansas City and across the country that are looking for the same thing – a day without worry that PKD will impact our children and every future generation. I volunteer for my children, Emily and Hunter. I am willing to accept what having PKD may mean to me in the future, but I am not willing to accept the effects of this disease for my children.
Karyn Waxman - Germantown, Tenn.
I can honestly say that the satisfaction I receive staying actively engaged as a volunteer in the PKD Foundation's mission to find treatments and a cure for PKD far outweighs the work element by a long shot. Whether it's rolling up my sleeves to organize a fundraising event, networking to raise PKD awareness, or simply empathizing with a fellow patient, I know that my participation is meaningful, purposeful and appreciated. The overall experience is empowering and optimistic…a feeling I greatly prefer to the fear and dread that accompanied my PKD diagnosis 13 years ago. Whatever I can do for my ailing kidneys ultimately helps my heart.
Eric Myszka - Chicago
I recently lost my mother to a long hard fight with PKD and the lack of public awareness of the disease always amazed me. I decided to volunteer with the goal to build awareness and provide support to those who are currently fighting the disease in the Chicago area. There is a lot of potential in Chicago to help the Foundation find treatments and a cure for PKD.
Christina Prieto - San Antonio
I volunteer because I live with PKD. I think it's important to always have an understanding of the changes that are happening in our PKD community. I got involved after experiencing a ruptured cyst and realizing that I (just like my father) may too be on dialysis some day. I hope that my younger sisters can see that you can live a perfectly normal life with PKD.
Read Christina's testimony
Kari Lusby - Roseville, Calif.
My family began our PKD journey in March 2013 after our youngest son, Honor, was diagnosed with ADPKD. Honor had been experiencing severe back pain, and after multiple doctor visits and tests, we were surprised and devastated by the news that our precious four-year-old had PKD. Honor is the first in our family to have PKD so we want to learn everything we can about the disease and how to fight it. Approximately 10 percent of the people diagnosed with PKD have no family history of the disease, with PKD developing as a spontaneous (new) mutation. Once they have it, they have a 50 percent chance of passing it on to each of their children. We are determined to end PKD for our son, Honor, for all of the wonderful families we have met battling the disease and for millions of others worldwide.