Volunteer Stories

'I wouldn't wish this disease (PKD) on my worst enemy,' is a quote that I was told my grandfather said as the cysts grew and slowly killed him from the inside. I barely know my family, but I did see my mom again just before she died-only 80 pounds and in extreme pain. Yet, she still had the biggest smile when I walked in the room. I volunteer to raise money and spread awareness to make PKD history.

-Amy Dixon

I have been the Oklahoma Walk Coordinator for the past two years. I became involved with the PKD Foundation when they started a chapter in Oklahoma in 2010, the year I was diagnosed with PKD. I needed to do my part to raise funds and awareness. I have lost several family members due to this disease and most recently my sister Marlena in 2012. By becoming involved with the PKD Foundation, I have met some amazing people who are committed to finding a cure. It's in our hands to make a difference so future generations will never know the full effects of PKD.

-Anna Patterson

I volunteer for the PKD Foundation in support of the five members of my family with PKD, including myself. Fundraising for the PKD Foundation is important to me in hopes of finding a cure. I hope to reach out to those affected with PKD by sharing my story and hopefully helping them in their journey with this disease as well.

-Ashleigh White

I volunteer for the PKD Foundation because this horrible disease has brought more than enough ill health to me and my family. Who better than a PKD patient to tell the rest of the world that we exist and to advocate for us.

-Barbara Seidman

Volunteering for the Toledo PKD Chapter is a true family affair. We all work together throughout the year to fight PKD for future generations. Attached is a picture of myself and my cousin Erin Stampflmeier. Erin is the blond and I am the brunette. Erin is my cousin and the Toledo PKD Walk Coordinator. I am the Toledo PKD Chapter Coordinator. Both of our mothers (who are sisters) have PKD. My mom has had two kidney transplants and Erin's mom is schedule to have her first this year. It is a donated kidney from her father to her mother! Like I said- a true family affair! 

-Bethany Bondy

I am volunteering for the PKD Foundation since 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 Hospital after a failed one in November of 2011. I believe my story and experiences can help others and hopefully educate them on choices they have while dealing with the illness, as well as financial options and resources available. 

-Carol Mainolfi

I volunteer for the PKD Foundation for my Daughter, for public awareness, and for the possibilities of a cure! 

-Carrie Ann Harvey

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. I want to build a relationship with the PKD community and want to carry the foundation locally to the next level of exposure since many people have never even heard of PKD. I am excited to volunteer for such a great organization. 

-Christina Prieto

I recently lost my mother to a long hard fight with PKD and it always amazed me that people have no idea what PKD is. I decided to volunteer as the Chicago Chapter Coordinator with the goal to build awareness of PKD in the Chicago area. Chicago is a huge market and I feel the PKD presence is not as robust as many other foundations and causes. There is a lot of potential to build awareness of PKD and ultimately use the resources of the city to help the Foundation. 

-Eric Myszka

I volunteer for the PKD Foundation because PKD runs in my family. I have watched the devastating effects this disease has on had on my loved ones and want nothing more than a treatment and cure. I have watched my aunt go through dialysis and two kidney transplants, and my mom will have a life saving kidney transplant this year. I have cousins and a younger brother that have the disease and I volunteer to raise funds, in hopes that there will be a treatment and cure so they can live a long healthy life without having to suffer the effects of PKD. 

-Erin Stamflmeier

I volunteer not only for my daughter who has ARPKD, but all of the children out there that have this terrible disease. It is my hope that one day there will be a cure for ARPKD and 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. 

-Jana Cox

I am from a PKD family. My father died when I was six years old and I have lost three siblings to kidney failure. I have a sister that has received a transplant, as have I. I have had my life saving kidney for seven and a half years. My native kidneys have been removed so basically I don't have PKD anymore. I have several nieces and nephews that have PKD as well as possibly my oldest son who has not been checked. We have attended as many Chapter meetings as we can and share the information with the rest of the family. 

-John Beers

We volunteer for the PKD Foundation to show people how to live life with PKD, to make a difference in the lives of people affected with PKD and finally to know that we helped bring awareness to others to a disease that has affected so many people in our family. We volunteer to know that we helped in a small way to advance research to find a cure for PKD. 

-John and Katie Burge

In 2007, we discovered that our daughter, Lauren, four at the time, had PKD. There is no history of this disease in our family. As fate would have it, there was a Walk for PKD in our small community of Southlake, Texas. I went to the Walk, met with the Chapter and Walk Coordinators and have been involved with the Foundation ever since. In 2011, my girlfriend and I organized a tennis tournament for PKD as well. I volunteer because I am a mother. It is my responsibility to do everything that I can to keep my child safe and healthy.

-Judy MacMillan

As a volunteer for the PKD Foundation for more than 12 years, I can honestly say that the satisfaction I receive staying actively engaged in our organization's mission far outweighs the work element by a long shot. Whether it's rolling up my sleeves for research, organizing a fundraising event, networking for PKD advocacy and awareness, or simply empathizing with a fellow patient, I know that my participation is meaningful, purposeful, and appreciated. Additionally, volunteering affords me the opportunity to meet remarkable people, including the amazing doctors and researchers who are dedicated to the PKD cause. 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. 

-Karyn Waxman

I volunteer as a Chapter Coordinator to raise awareness and research money. I volunteer to be a resource for others with PKD, to be a source of information or a sympathetic ear. But, most importantly, I volunteer for my kids. I want them to be able to have as many options as possible should they be diagnosed with PKD. I want them to know that individuals can make a difference and hopefully inspire them to continue the work with me. 

-Kristee Adams

PKD affects 15 of my immediate family members. PKD took my grandpa in 1940 and my Mom in 2004. So volunteering comes naturally to help raise funds for research, which gives us hope for treatments and a cure. We want to be a cheerleader while promoting education, support and advocacy. We feel that volunteering is serving a cause greater than one's self, a way of giving back to the community for the many blessings we have received. It's rewarding, a chance to make a positive difference and a walking billboard to raise awareness of organ donation. 

-Laura Moyer

I volunteer for the PKD Foundation because several folks in my family are affected by the disease. Thirty years ago our daughter was born with what we were told was ARPKD. We were shocked. Then my father-in-law told us that he had PKD. He and my mother-in-law had never told anyone he had this illness. I told my husband that he should be tested since in my research I discovered that PKD held a 50% chance of passing onto to your children. My husband was tested and he did have PKD. So for a few months we thought we had the possibility of transmission for both ARPKD and PKD. My daughter was about four months old when my husband was diagnosed. On our next visit to our daughter's nephrologist, we discussed my husband's diagnosis and at that point they changed our daughter's diagnosis from ARPKD to PKD. I remember those first six months of my daughter's life to be very confusing, frightening and stressful.

So I volunteer to help raise money to research PKD and to help raise awareness and support others who are diagnosed with PKD. I remember how alone I felt for many years not knowing anyone outside my own family who had this. It breaks my heart to think of others feeling that alone.

-Linda Bracket

I volunteer for the PKD Foundation because my son was diagnosed with PKD at birth. He was only given 6 weeks to live and is now almost 17 years old. I cherish every day that I have with him. I volunteer to help raise awareness so there is hope for a treatment and ultimately a cure for PKD so my son and thousands of others that suffer from the devastating disease have the chance at a long, healthy life. 

-Lori Odell

Why do I volunteer

1. It is important for human beings to be of service to one another.
2. To hopefully impact the resolution of our disease.
3. To increase awareness of PKD...the little known disease.
4. It feels rewarding - especially when I can talk to a newly diagnosed person and give them hope.
5. I am now retired and have the time.

-Marjorie Blanchard

My wife and son have PKD. She just recently received a kidney transplant and I recently donated one in a paired exchange coordinated through the University of Maryland and the Johns Hopkins Hospital. I have an extensive background in sales and love public speaking, coordinating events, and educating people about PKD. I truly feel this is a sort of calling for me at this time in my life. I've gotten tired of everyone talking about doing things in life and doing nothing. I don't want to talk about doing something to help others, I want to get out and actually help others. 

-Matt Mainolfi

My name is Melissa Finch, and I'm 34 years old. ADPKD runs in my father's side of the family. I have PKD. I've lost loved ones to PKD, and to issues associated with their treatment for PKD. My husband and I are the parents of four children, ages 11, eight, three and one. That's why I volunteer. 

-Melissa Finch

I learned about PKD almost seven years ago when my youngest son was born and he and my oldest were diagnosed with ARPKD. Since then I have been an active volunteer with the Foundation. I volunteer to help me feel I am doing something positive with this disease that affects my family on a daily basis. I also volunteer to advocate for my boys and show them how to make a positive impact with their diagnosis. 

-Michele Karl

I want to share what I have learned about PKD with others. I want to learn as much as I can about this disease so I can fight it! I want to help find a cure so that others don't have to suffer. 

-Molly Myers

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 a worry about PKD for our children. While my role as Chapter Coordinator has been rewarding to me and provides me with a way to fight this disease, there is another reason that I volunteer. Their names are 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. 

-Nicole Harr

After watching five family members (including my father and sister) lose their battle to PKD before age 55, I was determined to help get the word out about PKD. I was fortunate to get a transplant from a generous coworker at age 51. With this gift of life, I have reached the age of 58 and am the healthiest I have ever been! With connections in the medical community, I opted to ensure we reach out to the Greater San Antonio Area to get the word out about ADPKD, ARPKD and organ donation. I have met many people through my volunteer 'job' that have helped me network this opportunity. I know will ensure a better future for my 12-year-old niece and 14-year-old nephew living with PKD. One person asked me for a three word summary of why I volunteer with the PKD Foundation…... the answer was and is 'Best Paycheck Ever.' 

-Patti Ruffin

I decided to become more proactive and less secretive about PKD for several reasons. One, I lost a cousin, like a brother to me, to PKD. He was a gifted musician and recording artist with his band The Tradewinds. My cousin's last words to me were 'Tell them about PKD.' In 2004, after my cousin's death, I decided to participate in the Walk for PKD and I formed the Two Red Roses Team in honor of my cousin and his most famous song 'Two Red Roses.' Secondly, I discovered that PKD recieved less funding than less prevalent diseases. Thirdly, and most important, finding a PKD treatment and cure became my life mission when my only child (she's now in her 20s) was diagnosed with PKD.

PKD has been in my family for 100+ years and four generations. I participate with the PKD Foundation to remember the seven family members I lost to PKD, to honor the 15+ family members (most are afraid to be tested) living with PKD and to make sure that the fifth generation of our family never knows the full affects of PKD.

-Rosalie Corbett

I coordinate the Central Jersey Walk for PKD to help raise awareness and funds for this relatively unknown disease which affects my family. My father was on dialysis for six years before having a successful transplant and I was recently diagnosed with PKD. I want to know that I've done everything in my power to prevent future generations, including my daughter, from suffering the full effects of PKD. 

-Stacey McClain

I am volunteering for the PKD Foundation because I want to help the next generation avoid this terrible disease. My wife survived PKD and is two-years-post double transplant. We're finally at a point where I can 'give back,' and I hope (in some small way) I can help. 

-Stan (Toothpick Man)

I volunteer for the PKD Foundation, an organization that benefits the lives of millions of people by providing support, awareness, education, encouragement and hope. I believe the Foundation is truly the only organization committed to finding a cure and treatments which are so desperately needed. PKD is a daunting diagnosis leaving many to feel very alone. Volunteering allows me to be the voice of awareness in my local community and offers me the opportunity to lend a shoulder in support of those in need. 

-Stephanie Smetana

I became involved with the PKD Foundation after finding out my daughter, Brooke, who was 19 at time of diagnosis, had PKD. I knew nothing about it, had never heard of it and knew no one who had. We later found out it runs on her father's side. I became one determined mama not to let PKD take my daughters wonderful future from her, so I jumped on the PKD bandwagon and started researching PKD. I came across the PKD Foundation and discovered there was a convention coming up and decided to go. I went and obtained a lot of wonderful and not so wonderful information, but information I did need to know about. I met a lot of wonderful people, and hence, I found a new family in the world of PKD. From there I got involved with the Phoenix chapter for a few years, moved to Colorado, and became the Walk Coordinator for Denver. PKD is now part of my everyday life, I live and breathe PKD, I WILL make a difference for my daughter in her world of PKD. My donate life license plate reads - END PKD.....and I hope one day we will. 

-Sue Swift

I support and volunteer for the PKD Foundation's Detroit Chapter because the majority of my family, starting with my mother on down, have been diagnosed with ADPKD. My mother passed away at age 54 in 1997 from this incurable disease. In 2012, my eldest sibling at age 47 passed as well. My brother at age 45 is currently in the process of starting dialysis. Because of this, I wanted to get involved to learn more about and spread the word so we can help find a cure for PKD. 

-Theresa DeLong

I decided to volunteer for a couple of reasons. One I don't want to wait and do something about a disease until it affects me physically. Being proactive and doing something to help others makes more sense to me.

Second, I met a remarkable person that has taught me that even if something is hard to deal with, she is stronger because she can overcome it. I want to help her, her family and many more people overcome this disease. 

-Zarai

I want to do all I can to help those in need of transplants. I'm getting involved with the PKD Foundation to increase awareness, education, support, advocacy and fund raising so that dialysis will become a thing of the past. I do this for myself, my children, my grandchildren, and for you.

-Yvonne DiCarlo Clemens