Advocacy Champions Network

The PKD Foundation’s Advocacy Champions Network (ACN) is a group of PKD community members from across the U.S. engaged in formal advocacy efforts with federal policymakers. Members of the ACN are hand-picked to share their personal stories and advance the legislative priorities of the PKD community.

After completing training courses on topics like Congress and the media, our champions will participate in formal PKD Advocacy hill days and routine outreach to their Congressional representatives. We are focused on advocating for federal funding through multiple avenues to improve the lives of the PKD community. Check out our recent blog to learn more.

    Why the Advocacy Champions Network?

    With so many groups competing for the attention of Congress and regulators, it’s critical for the PKD community to voice our legislative priorities as a united collective. The PKD Foundation dedicates resources to ensuring Congress and federal agencies are aware of the nuanced needs of the PKD community, with the goal of promoting legislation, regulation and federal funding opportunities.

    The PKD Foundation’s advocacy with Congress and federal agencies is an annual cycle that rewards consistent, regular outreach and the development of years-long relationships with bipartisan legislators from a variety of districts. PKDF advocacy efforts engage more than 35,000 advocates across 49 states and the District of Columbia. Even if you are not participating in the ACN in this cycle, we encourage advocates across the country to write letters to and meet with their representatives because it really does make a significant difference.

    Registration is now open! Share your interest in joining the ACN today.

     

    Why is advocacy important?

    With so many people and groups competing for the attention, it is critical to make your voices heard. We encourage people to meet with their representatives because it can make a significant difference.

    Receive notifications about opportunities to raise your voice for PKD patients.

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    Amy Apprill

    Massachussetts

    My PKD experience

    PKD literally punched me in the gut and woke me up to the many needs of PKD patients. I am a marine biologist and I lead an active lifestyle, often SCUBA diving multiple times per day. However, one morning I woke up with a distended abdomen and pain and was not able to eat a full meal or walk my dogs. Imaging revealed that the entire left lobe of my liver was covered with cysts, and subsequent tests revealed that my liver condition was due to PKD (PKD2 mutation). I was very lucky that the cysts were so localized, and I was able to have my left liver lobe surgically removed. I’m just a few months after surgery and thankfully able to return to most of my previous lifestyle. My father also has PKD and is awaiting a kidney transplant. During my PKD journey, I’ve become aware of some things that I’d like to help fix. First, there is little knowledge of PKD and its impacts on the general population and even some physicians are unaware of this disease and its symptoms. Secondly, PKD takes a huge financial and emotional impact on patients and families and I found few resources or guidance available in those areas. Lastly, the transplant system in the U.S. is broken. There are too many people awaiting kidney and liver transplants, and transplants need to happen sooner when patients are healthier, regardless of wealth status or racial background. Part of the reason I became an Advocacy Champion was to help provide a voice to my own physician, who under the current guidelines, is not able to provide the transplants (the cures) to the patients who need them.

    Family with PKD

    Yes, my father and I are both living with PKD.

    Being an ACN Champion

    What I’m excited about: I’m excited to spread awareness of PKD to my community and representatives by sharing my story, and to educate about the changes needed to help PKD patients and researchers work toward a cure.

    The moment: When my doctor started off our initial conversation with “this is a really hard disease” and “none of the treatment options are good ones.” I’m an optimist and advocacy seemed like the best choice to help myself and others living with PKD.

    My advice

    To someone recently diagnosed with PKD: You’re not alone and will benefit from establishing a support network. The PKD Foundation has an outstanding mentor program and there are also active Facebook groups that can provide support.

    Helpful resources

    PKD Foundation: It’s given me hope. I feel like I’m doing something worthwhile to help others.

    Other resources: A Facebook group for polycystic liver disease has provided me with immense resources as well as support.

    Tom Cecere

    Vermont

    My PKD experience

    I learned of my diagnosis at 19. My grandmother passed away of kidney disease at 51; my father went on dialysis in his 50s and it complicated an existing heart problem. He passed away at the age of 63. However, my aunt who also had PKD, thrived on dialysis and lived to 80. I knew that my onset would very likely be in my 50s, so it didn’t cloud my days much when I was young. I did take preventative measures; my doctor had me on blood pressure reducers before I needed them and I stayed active through my 30s. We did decide to have children because I had a strong sense that my experience was so much easier than my older relatives so if a child had it, there would be even more time for treatments to improve their disease. We’re very fortunate that neither child has the disease. I began to have elevated creatinine in my early 50s. It accelerated and by the time I was 56 it was pretty high and was somewhat affecting my day-to-day life. It was hard to climb stairs and regulating my body temperature was impossible. I was cold all the time unless I was sitting in the sunshine. My work is in software, so I was able to continue working through my sickness. I couldn’t prevent my son from donating a kidney; I received the donation at 58 and it seems to have gone very well. COVID-19 has been a trial, but after a transplant, you learn to be wary of being around sick people anyway. I work remotely and it hasn’t had too much of an impact on my life. I live in rural Vermont (is there any other kind of Vermont?) so getting outside is easy without encountering others. My family is solicitous of my health—perhaps a bit too much—and I’m quite a hypochondriac at this point, but overall I’m enormously lucky. You’ll hear of many people who have difficult outcomes, but mine has so far gone as well as one could possibly ask.

    Family with PKD

    My father, grandmother, and aunt all had PKD

    Being an ACN Champion

    What I’m excited about: The political outreach training and speaking with the congressional staff. Meeting other PKD patients!

    My advice

    To aspiring advocates: Don’t be afraid—everyone is very nice and accommodating.

    To someone recently diagnosed with PKD: Take a deep breath. There are so many things to think and worry about—but you generally have a lot of time to do it. I was quite sick before my transplant but I was still able to work full-time up to the day before the transplant. The bigger worry is passing it on to children, but the difference between my life and my father’s life is night and day, even though we shared the same disease. The PKD Foundation has driven so much progress in stabilization and treatment that most people can lead a full life even with the disease.

    Helpful resources

    PKD website and emails; local hospital materials.

    Karen Solomon Edwards

    Michigan

    My PKD experience

    Family with PKD

    No

    Being an ACN Champion

    What I’m excited about: There were many beneficial moments that I encountered as an ACN Champion. One that is the most exciting was receiving the email stating that I’d been accepted as an Advocacy Champion. Additionally, speaking with the legislators and sharing my “kidney journey” was equally important. Further, having polycystic kidney disease is a contributor to kidney failure, however, few people are aware of this fact. As the only person in my family with PKD, having PKD was challenging. I, nor anybody I knew, knew very much about this disease. As I’ve been given another lease on life by having received a kidney transplant, I’m committed to advocating and educating to illuminate the adverse ills of PKD.

    What it means: An advocate is one who is committed to impacting a cause in a manner that will evoke positive change to societal members, and in my case, PKD patients are my society and target audience.

    The moment: I realized that I wanted to be a kidney advocate after I received my kidney transplant. Moreover, I realized that with the knowledge I obtained after my transplant and getting involved with the PKD Foundation I believed I would have had better health outcomes from the onset.

    My advice

    To aspiring advocates: Be persistent, study, ask questions, and participate.

    To someone recently diagnosed with PKD: Ask questions, take responsibility for your health care, identify a kidney network, and find a mentor or coach familiar with PKD. Lastly, ask questions, ask questions, and ask more questions.

    Helpful resources

    PKD Foundation: Being involved with the Advocacy Champions Network and serving as a PKD peer mentor allows me to feel good about myself. It’s so important to share your story to serve others. I felt uncomfortable and isolated having PKD and don’t want others to go through what I went through.

    Other resources: PKD Foundation, NKF, AAKP.

    Lainie Esquivel

    California

    My PKD experience

    I was diagnosed with PKD in my early 20s and I’m the third generation in my family, as far as we know. It’s been so encouraging to see the positive progress in each generation. My grandfather was diagnosed late in life and needed dialysis, my father received a living donation from my mother, and now I have the opportunity to consider tolvaptan for treatment. Although I’m sometimes disheartened by the complications I’ve experienced, most recently a near-septic kidney infection and preeclampsia during my pregnancy with my daughter, my heart is so full for the opportunities the future holds. I am loving being a new member of the ACN, building relationships within the PKD community, and working together to improve outcomes for current and future patients!

    Family with PKD

    My father (living with PKD, transplant recipient), my aunt (passed away and had PKD), my grandfather (passed away and had PKD)

    Being an ACN Champion

    What I’m excited about: In my short time as an ACN champion, I’ve loved learning more about the legislative process and how I can become a more active participant to advocate for the PKD community. Connecting with my representatives has always felt incredibly daunting and intimidating, but with the support of my fellow ACN champions, I recently wrote 10-15 holiday cards for members of Congress near and far. I’m so excited to see what conversations arise in the new year!

    What it means: I think everyone diagnosed with PKD processes it in their own way. For me, I’ve always struggled with accepting what the future holds, knowing how PKD has impacted other family members. By taking an active role in advocacy efforts, I feel that I’m investing my energy in a positive way and contributing to a better life for future generations.

    The moment: I submitted a Voices of PKD story last year and was invited to submit a recording for a research summit this summer. It was a huge step out of my comfort zone, but I felt so supported by the PKD Foundation. As I explained my story and gave my perspective into what might help patients like me, something was sparked within me and I knew I had to continue pursuing these opportunities.

    My advice

    To aspiring advocates: Start small! Your voice matters! And advocacy can be a fulfilling way to build your personal community of people touched by PKD.

    To someone recently diagnosed with PKD: Find the team of doctors who makes you feel heard, understood, and cared for!

    Helpful resources

    Recently, it’s been valuable for me to participate in various Facebook groups within the PKD community, including tolvaptan support groups. While I have a wonderful relationship with my nephrologist, there is something so valuable about hearing someone’s day-to-day experience!

    Glenn Frommer

    Colorado

    My PKD experience

    I was diagnosed in 2014 as a secondary finding of an MRI, and I immediately immersed myself into learning more and understanding my options. I became more involved with the PKDF in 2018 by donating, joining the research grant committee, and joining the ACN. While my kidney function is still acceptable at age 60—I have a rare non-PKD1/2 mutation—my TKV’s are three times the normal and I know it’s a matter of time before the function starts to decline. I became a vegetarian, drink over three liters of water per day, exercise regularly, keep my weight down, take several off-label meds, enrolled in clinical studies, and created the RideForPKD (rideforpkd.org) to raise money for research. I am ALL IN to find a cure for PKD!

    Family with PKD

    Yes

    Being an ACN Champion

    What I’m excited about: Taking our messaging straight to members of Congress with real “asks” for action against specific bills and requests. It’s not just advocacy for advocacy’s sake, but for real change and action. That’s exciting.

    What it means: Being a strong and direct voice for those in the community who are voiceless, and advocating for common sense bills and financial support that helps our community. When I speak to others, I always have our community—many who suffer because they lack resources, access to great advice and care, or factual and actionable information—at the top of my mind when having these conversations.

    The moment: When several factors came together for me—my ability to influence people, with my PKD diagnosis, with the PKDF and our advocacy partner CURA Strategies asking me to do so. If we, who suffer from PKD, don’t advocate for ourselves (this includes ACN but also participation in clinical trials and also educating within our communities), who do we expect will?

    My advice

    To aspiring advocates: Allow the importance of this advocacy work to outweigh the reasons most people find to not advocate: I don’t have the time, I’m not good in front of powerful people, no one’s going to listen to me. We have to prioritize our passion for helping ourselves and those in our community above any hurdles or roadblocks.

    To someone recently diagnosed with PKD: Learn, learn, learn. There are so many great resources at/or associated with the PKD Foundation that help us in finding the right nephrologists, understanding the disease and its progression and tell-tale signs, learning about clinical trials to participate in, learning about the impact of medications and lifestyle choices on the progression of cyst growth, and becoming part of the community.

    Helpful resources

    PKD Foundation: Only for the positive. People who have more advanced PKD give me advice about what’s to come and how they’re dealing with it. Being included in the PKDF’s research grant committee has given me insights into the progress and struggles of research into this disease. Getting in front of congressional staff to advocate for our priorities tells me that more education in the broader community is needed but also that people care.

    Other resources: I created the RideForPKD, a 5,300-mile bike ride across the USA in the summer of 2022, to raise awareness, build community, and raise $500,000 in additional funding for the PKDF research grant program. This four-month Ride will connect with many of the PKDF’s communities around the country to build community, as well as with more than a dozen research institutes to thank researchers for their PKD-related efforts and report back to our community on progress that is being made. Additionally, through the generosity of sponsors and donors, we’ll raise funding to support at least three additional, two-year research grants (each at $160,000) to accelerate research into the mechanisms and potential treatments for our disease. Please click through to www.rideforpkd.org for more information and follow us on all social media platforms to learn how you can support, participate, and follow our progress.

    Diana Bruen — PKDietitian

    Thomas Weimbs — SB Nutrients and KetoCitra.

    Kay M. Gilbert

    California

    My PKD experience

    In 1999, my then-partner, now-husband, was diagnosed with PKD. Neither of us had heard of the disease since he has no known family history. When he said that he’ld ultimately need a donated kidney I said, “take one of mine.” His mother found out about the PKD Foundation and told us about it right before the 2000 conference. He attended that one, and we’ve attended every one since. We’ve sponsored the last two because we think it’s of such great value to bring patients, caregivers, doctors, researchers, and pharmaceutical companies together under one roof (even a virtual one.) We’ve also attended the very helpful and supportive meetings of our local PKDF community. It took a while, but my husband found an excellent nephrologist who wasn’t familiar with PKD but was willing to educate herself. She’s since become his primary doctor. My husband was on dialysis for a few years, but in 2015 he was ready for a transplant, which we did through UCLA. I had a rougher time than he did, but we both came through it well. Since then, we’ve been dealing with the ups and downs of medication changes, side effects, and now COVID-19 vaccine issues. I’ve occasionally felt guilty that my donation has caused him problems, but he’ld have been at much greater risk of COVID-19 if he were still on dialysis. We both remain impressed that the Foundation funds such amazing research. The science has advanced markedly since 1999, and we know the Foundation will continue to move us toward more effective treatments, if not a cure.

    Family with PKD

    No

    Being an ACN Champion

    What I’m excited about: I’m looking forward to telling members of Congress how important PKD funding is and how the PKD Foundation is advancing the science.

    What it means: Bringing the attention of elected representatives to our issues and making them known more widely to medical professionals and the general public.

    The moment: I attended a briefing on the ACN when it was first announced in October 2020, and I thought I could make a contribution.

    My advice

    To aspiring advocates: Your personal story is your most effective advocacy tool.

    To someone recently diagnosed with PKD: Get plugged into the PKD Foundation, especially your local community, and let fellow patients, researchers, and doctors guide you through the science and your options.

    Helpful resources

    PKD Foundation: The Foundation helped my husband and I get the information and resources we needed so that I was able to donate a kidney to him in 2015.

    Other resources:The PKD Foundation, and especially its annual conferences and our local community, were an NS mobile source of information and support. My husband’s excellent nephrologist also has helped guide us and answer our questions.

    Michelle Hoffmann

    Virginia

    My PKD experience

    I first learned of PKD when I met my husband, Chris. His father had PKD and died at the age of 39. We knew that there was the possibility that my husband or his siblings could have PKD. It wasn’t until my husband was in his late 40s that he was diagnosed with the disease. All of his sisters (seven of them) were tested and he was the only one with PKD. On January 16, 2015, my husband was lucky to receive a kidney from his youngest sister. This day is significant in that it was the 50th anniversary of their father’s death from PKD. We like to say that it’s not a sad day because now it’s a happy day! Our daughter, Kyle, was diagnosed with PKD in the fall of 2020. She’s in the early stages of the disease. We’re hopeful that through research there will be treatments available and a cure in sight.

    Family with PKD

    Both my husband, Chris, and my daughter, Kyle, are living with PKD.

    Being an ACN Champion

    What I’m excited about:

    What it means: As an advocate, I’m most excited about being able to support the PKD community and make a difference in the lives of those living with PKD. I hope that by being an advocate I can bring awareness to our representatives and senators about PKD, and I hope that they’ll support laws that will have a positive impact on the PKD community. While I don’t have PKD, my husband and daughter do. I have two small grandchildren and I hope, if either of them have PKD, that there will be a cure or a treatment available to them in the future.

    The moment: I am the Volunteer Walk Coordinator for the Walk for PKD. Through this position, I’ve learned a lot about PKD. When the first advocate class was announced I did think about applying to be an advocate, but I decided not to. When it was announced this year that there would be a second class, I decided that I wanted to do it. So, there was not a “moment” that lead me to become an advocate but rather a slow progression of thoughts.

    My advice

    Since I don’t have PKD, I discussed this question with my husband Chris who does. There are several things that we think someone who is just diagnosed with PKD should know.

    • Find doctors who are knowledgeable about PKD, whose opinions and guidance you trust, and someone with whom you can establish a good doctor/patient relationship. There will be overwhelming amounts of information that you’ll get and you’ll need to rely on the professionals to guide you. Also, you’ll spend a lot of time with them.
    • Educate yourself about PKD through reliable sources, such as the PKD Foundation.
    • Don’t believe everything you read…learn to question and research information.

    Helpful resources

    We’ve received valuable information from the PKD Foundation as well as his nephrologist and from the INOVA Fairfax Transplant Center.

    Nancy Kaminski

    Pennsylvania

    My PKD experience

    My mother passed away from complications of PKD in 1969, when I was 13. She was only 49, but not much was known about PKD at that time. Two of my three older brothers inherited the disease and when I was in college, discovered that I too had inherited PKD. Both brothers went on to receive kidney transplants, one from a deceased donor and the other from our oldest brother, the only sibling who didn’t inherit PKD. My oldest brother is alive and well, but the other two died of cancer 17 and 18 years after their transplants. I was able to avoid renal failure until my mid-fifties and received a kidney from my son. I have two sons and neither of them have PKD — I am well aware of what a blessing that is! I have two nieces who have PKD, one has been transplanted and is doing well and the other is doing well with minimal failure at this time.

    Family with PKD

    My mother and two older brothers died due to complications of PKD. I also have two nieces who, like me, are living with PKD.

    Being an ACN Champion

    What I’m excited about: I am most excited to be a part of bringing awareness of PKD to our lawmakers, who can then make informed decisions about legislation that affects not only PKD patients but individuals with other types of chronic conditions.

    The moment: I received a new kidney from my oldest son in 2013 and have become involved with our local transplant organization while continuing my involvement with the PKD community. The proposed legislation to protect living donors was my impetus to get involved and make sure that these generous, selfless donors would be protected. Before retiring from full-time work as school nurse, I had experience as legislative chair for the PA Association of School Nurses and Practitioners, visiting state lawmakers and working to help pass laws that help PA schoolchildren – meeting with our state officials and advocating for our kids was challenging but rewarding!

    My advice

    To someone recently diagnosed with PKD: First, reach out to the PKD Foundation and to your local chapter – you are not alone! There are so many good folks who will help you navigate this scary diagnosis. The Foundation offers so much in the way of education and support. When you’re ready, get involved – attend a walk, volunteer with your local chapter and share what you learn with your family and friends.

    Helpful resources

    EVERYTHING on the PKD website — the facts, the personal stories, the articles, the suggestions and even the recipes! My nephrologist who has been knowledgeable and proactive in caring for me for over 20 years. And the people in my local community (Pittsburgh) who are like family — we encourage one another and celebrate the successes but also support and share the rough times.

    Jeanette Knill

    Wisconsin

    My PKD experience

    I am a mutant. At the age of 49, I started to have significant pain on my right side just below my rib cage. I was sent for an ultrasound to check my gallbladder and that is when it was discovered that I had many cysts in my right kidney. A follow-up CT scan confirmed a diagnosis of PKD showing many cysts in both kidneys. My kidneys are ten times the size of normal kidneys. With this diagnosis so many things made sense: the high blood pressure despite a healthy lifestyle and the frequent blood in my urine with no signs of a bladder infection. No one thought to look at my kidneys since I had no family history of kidney disease. I am a Physical Therapist so over the years I just dealt with the frequent back pain and never suspected it was from my kidneys. I was confused, frightened, and felt out of control. As a clinician, I understand the value of research so I immediately looked for a study related to PKD; I was accepted into the Tolvaptan drug studies. Because of my participation in the studies, I have been on Tolvaptan for over 13 years. My pain is significantly less and my kidney function is good. I have learned to seek out good healthcare and ask questions if something isn’t making sense. My ability to cope with this disease has improved. I am grateful to so many people for helping me on my journey.

    Family with PKD

    No

    Being an ACN Champion

    What it means: I feel that I can help bring awareness to the existence of PKD. When I was diagnosed 13 years ago at the age of 49, I wasn’t aware of this disease and neither were any of my friends or family. I have no family members who have the disease. I had a history of mild high blood pressure in my mid-30s despite being active, normal weight, and on a healthy diet. In my 40s I started to frequently have blood in my urine that my doctor contributed to peri-menopause or a urinary tract infection. I had frequent back pain that persisted despite exercise and other interventions. My doctor never suspected PKD since I had no family history of this disease. As a physical therapist, I was surprised that I didn’t learn about the existence of PKD in school. The pain, blood in urine, and high blood pressure are all common occurrences with PKD. If I’d known about the disease, I could’ve been more proactive in seeking a diagnosis, therefore, more proactive in treating my symptoms appropriately. I hope my advocacy can help others, especially those without a family history, can achieve a diagnosis and get improved care for their symptoms.

    My advice

    To aspiring advocates: Jump in. We all have stories to tell and gifts to share. We need people like you to help bring awareness to PKD, the struggles and successes that those of us with the disease encounter.

    To someone recently diagnosed with PKD: Go to the PKD Foundation website: pkdcure.org. When I was first diagnosed, I found so much helpful information. I was able to attend some seminars that the community sponsored and met some others with PKD. In addition, check into participating in a research study. The PKD Foundation has information to help guide you. When I was first diagnosed, recruitment for the tolvaptan studies was underway. I was able to participate in the research through FDA approval. Being in a clinical trial gives you an opportunity to help yourself and others.

    Helpful resources

    PKD Foundation: The PKD Foundation was very instrumental in providing opportunities for me to increase my understanding of this disease. My local community gave me the opportunity to meet supportive people that I’m still in contact with today. People who helped me cope with my fear and my disbelief in having this disease encouraged me to seek the healthcare I needed. The support I’ve received from the PKD community is a big reason for my decision to be an advocate today.

    Other resources: I have found the PKD Foundation and The National Kidney Foundation websites to be very helpful. I can trust that the information on these sites is accurate and well-vetted. A powerful book I read, Being Mortal by Atul Gawande, brought a good perspective to life, illness, and death.

    Greg Mainolfi

    Maryland

    My PKD experience

    I’m Greg! A second-year PKD ACN member from Towson, Maryland. I’m 27 and I’ve known about my PKD since birth. My mom is a de novo case and I’m an only child so no other family history. My mom went through kidney failure and years of dialysis but eventually received a kidney after my dad was able to be a living kidney donor through the paired exchange. She’s coming up on 10 years post-transplant! I’ve been active in the PKD community for years helping with the Walk in Baltimore, attending PKD conventions, participating in multiple clinical trials, and I conducted research on PKD genetic mutations at the University of Maryland for my undergrad thesis. I’ve now been working at the Living Legacy Foundation for five years coordinating organ and tissue transplants in Maryland and across the country! Trying to pay it forward for what lies ahead on my path. I’ve enjoyed serving as a PKD advocate with the ACN as it’s given me a new drive and I feel we are making a real difference for the future!

    Family with PKD

    My mother, Carol Mainolfi, is a kidney recipient now nine years post-transplant

    Being an ACN Champion

    What I’m excited about: I really enjoy learning about the most effective ways in which our voices can make a difference for PKD.

    What it means: Being an advocate means educating those around you about the things that you feel passionate about and encouraging others to empathize with that passion.

    The moment: As I get older, I’ve felt more issues with my PKD and felt powerless. Being an advocate has given me some power to make a difference!

    My advice

    To aspiring advocates: Being an advocate doesn’t require anything special; you can make a big difference just by participating.

    To someone recently diagnosed with PKD: Be sure to take advantage of your support system and the wider support of this community.

    Helpful resources

    The PKD Foundation website, pkdcure.org,  has been my go-to for information. Additionally, I wrote my undergrad senior thesis regarding PKD genetics so there have been many research articles that helped me understand the genetics, physiology, biochemistry of PKD.

    Debra McGinty-Poteet

    California

    My PKD experience

    I have had a global career in finance for 35 years and logged over 3 million air miles. I sat on two public company boards while I went through AV Fistula creation, a kidney transplant, bilateral nephrectomy, marsupialization surgery, AV Fistula reversal, a liver transplant and many infections. This all happened during the past 4 years. I am 66 years old and the 4th generation PKD person in my family. I work out daily and do not define myself as a sick person.

    Family with PKD

    My mother, aunt, uncle, grandmother, great grandmother, cousins, and my daughter are living with PKD.

    Being an ACN Champion

    What I’m excited about: I know advocacy moves the dial on funding. I have now been an advocate for 34 years and will not give up on finding a cure for this disease until it happens. I was part of the 21st Century Cures initiative and have also advocated in person with the National Association of Nephrologists for more research money. Being a squeaky wheel ultimately leads to results.

    What it means: A disease-free life for my descendants.

    The moment: When they told me I had the disease 35 years ago.

    My advice

    To aspiring advocates: Never give up.

    To someone recently diagnosed with PKD: This is the fight of your life and you need to take command early on as no one else cares as much as you do about your outcome.

    Helpful resources

    PKD Foundation: I have been a member for 34 years. It is an outlet for me to feel like I am actually doing something to cure this disease.

    Other resources: A personal dietician, ongoing daily exercise, and never feeling sorry for myself.

    Timothy Miller

    Georgia

    My PKD experience

    My mother had it, my sister, nieces, son, and more unknown family over how many generations? I was diagnosed at age 30, as my mother passed away. While it was a burden to have this information, it gave me time to learn about PKD yet learn how to live a full life anyway. It’s a family disease and we seem to be closer to ending the brutal pathway through our lives. Hope to see a cure in my lifetime.

    Family with PKD

    My Mother, Mrs. Ada Miller

    Being an ACN Champion

    What I’m excited about: I was given a living donor kidney by my cousin, and now I’m able to give back so that this disease stops transmitting to further generations in my family.

    What it means: Since I’d been on dialysis, had a kidney transplant, kept my jobs, helped raise our son, and costs were covered by insurance and Medicare, I see that it’s my turn to have some type of measurable impact toward a treatment and cure.

    The moment: When members of my family were diagnosed with PKD, it occurred to me that this has to ascend in wider recognition in order to stop affecting generations.

    My advice

    To aspiring advocates: As I’m learning, it’s important to discern how to funnel your passion into action.

    To someone recently diagnosed with PKD: Learn as much as possible on current and emerging treatments and put yourself in the right, positive mindset to move through to the best health outcomes. Live a long life.

    Helpful resources

    PKD Foundation: I’m not alone; we have each other to compare notes with and to see how to live well. The community has also helped me to get active in my disease treatment and cure. We need to be agents of change.

    Other resources: Bruce Springsteen. All his music speaks to me about overcoming hardships; learning how to be a better man, father, brother, son, friend, American, lapsed Catholic; and dealing with our imperfect selves. How to be authentic, honest, strong, and struggling but moving through it all anyway and failing and succeeding. The songs and videos compel me to make a difference.

    How I’ve survived so long: Diet, exercise, medicine discipline, check-ups, consistent blood draws, discussion on blood draws with Nephrologist to be informed on issues, brutal optimism, and getting involved in the disease to beat it.

    Annette Minnich

    New Mexico

    My PKD experience

    We know that my grandmother had PKD and that she passed it along to both her children. In my generation in the family, there were six of us, five of whom inherited PKD. Now, there are only three of us left. My big brother took his own life rather than live with this.

    I was 36 when I found out that I had it. I’m now 60 and the only one of us with the original equipment still working. Even my younger cousin is 10+ years post-transplant. It’s been hard at times. I went into mourning when I found out, but then I realized that life is what we make of it. I decided to make it a good one. There have been a lot of changes, mostly related to diet. Recently, I went from being almost vegetarian to vegetarian. I track protein and sodium pretty carefully. I don’t miss meat, and I really I thought I would. I’m learning to get creative with the menu and I enjoy that. I do struggle with depression, but I had that before my diagnosis so that is nothing new. I also have arthritis and fibromyalgia, so pain is a problem. I have a wheelchair for whenever I go out. Trying to figure out what pain is caused by which condition is just not worth the time. I thought that I could do this alone. My family is here for me, and I thought that would be enough. But as I get closer to the day when a transplant will be needed, I realized that I needed something more. Reaching out to others was hard, but I am so glad that I did. Having people who actually know what I’m going through has been uplifting. The more we pull together, the stronger we are.

    Family with PKD

    My paternal grandmother; my dad, Hal; uncle, Paul; three cousins, Ken, David, and Pam; my brother, Hal; and my daughter, Nicole. Sadly, with the exceptions of David, Pam, and Nicole, all the rest are deceased.

    Being an ACN Champion

    What I’m excited about: I think that contacting lawmakers, while a little intimidating, is very exciting. I feel like I’m helping them so that they can help us. The information that I’ve been given is making it easier than I thought it would be, too.

    What it means: It means that I can help to bring awareness of PKD to the rest of the world. It means that I can help lawmakers understand what living with this condition means so that they can help all of us living with PKD.

    My advice

    To someone recently diagnosed with PKD: Educate yourself. Learn as much as you can about PKD. Learn what the tests are for and what the results mean. You’ll need to become your own advocate.

    Helpful resources

    PKD Foundation: I’ve found friends and mentors within the entire PKD community. Until recently, I thought I could do this alone. I can’t. Having others who know the pains and the emotional wear and tear of this condition have been such an amazing help. I feel stronger and healthier because of this PKD community.

    Other resources: Attending the virtual PKD Connect Conference this past year was eye-opening for me. I didn’t realize that I needed to reach out to other people until I was attending. I’m so glad that I did. I found great inspiration in the movie Bohemian Rhapsody, the bio-pic about the group Queen. I know that PKD is not AIDS, and I know that the movie wasn’t terribly accurate, but it spoke to me. It gave me encouragement to keep singing through my own pain. As a singer, I tend to think in songs. Ones that help me through are Queen’s “The Show Must Go On,” “You’ll Never Walk Alone” by Carousel, Elton John’s “I’m Still Standing,” and George Harrison’s “Here Comes the Sun.”

    Adrienne Montgomery

    California

    My PKD experience

    Randomly woke up and was out of breath without doing anything. I’d just moved out of state and was by myself. I went to work but they sent me to urgent care. While there, they ran tests but were concerned so sent me to the ER. My blood pressure was 200s/90s so I had multiple tests done. A doctor came in at the end and said, “we aren’t sure what the issue is but you do have lots of cysts on your kidneys.” I was sent to a nephrologist and diagnosed with PKD. Since then, I’ve had multiple hospital visits for UTIs, severe hypertension, and six years ago had two aneurysms clipped in my brain. I was most recently diagnosed last year with PLD (polycystic liver disease) given the numerous cysts and initial concern for cancer (ruled out, thank goodness). I’m currently on Jynarque since I have rapidly growing kidneys but still have good renal function. So I just take it a day at a time and try to stay positive.

    Family with PKD

    No, I have no family with PKD

    Being an ACN Champion

    What I’m excited about: Helping advocate for those with PKD while raising awareness about the disease at the same time.

    What it means: It means helping bring a voice to PKD for others and hopefully enact change that betters not only to PKD patients but others with PKD.

    The moment: When I was diagnosed with PKD, I had no idea what it even was. I started volunteering to help with the Walk and got involved through educating others, as well as myself. For me, knowing that I can help someone else with PKD makes me feel better about my journey, and hopefully I can stand up for those who’ve lost a life or can no longer stand.

    My advice

    To aspiring advocates: Don’t be afraid to try. It’s scary putting yourself out there and maybe hearing a lot of “no” back. But out of however many times you get a “no” you’ll get a “yes,” and it makes it all worth it. Baby steps are steps, and no matter, what you’re always fighting for the right direction.

    To someone recently diagnosed with PKD: Don’t just google PKD! Find the right resources. For me, it was scary never having heard about PKD and not having anyone in my family with this disease. The PKD Foundation was my first source, and they sent me literature on what it is and what to expect. Find your local PKD community and get involved, even if it’s just a newsletter or coffee dates. Those connections are huge. Lastly, you aren’t the only one going through this. Everyone with PKD has a story to share, and we are here. Support, support, support.

    Helpful resources

    PKD Foundation: The PKD Foundation gave me a solid foundation to learn about PKD and to find my local Walk, even through multiple moves (Florida, Colorado, California). It was my stepping stone to get involved, meet others with PKD, and participate in studies. I had no idea until I attended what I believe is the Walk conference and then really realized how many families are affected. I was able to find my voice and educate others about PKD during graduate school, local Walks, and a blog about my PKD and having a brain aneurysm.

    Other resources: pkdcure.org; Valen Keefer, a PKD advocate on pkdcure.org and Instagram (she also has an amazing book).

    Jim Myers

    Indiana

    My PKD experience

    You can find my full story on my blog, Kidney Stories.

    Family with PKD

    I’ve lost five members of my family to PKD, including my dad, James W. Myers, Jr.

    Being an ACN Champion

    What I’m excited about: I’m most excited about the opportunity to advocate for PKD patients to my representatives in Congress and my state legislature.

    What it means: It’s become the center of my existence. I’m very proud to advocate in person and on social media for PKD patients everywhere.

    The moment: When I was on dialysis in 2012, Congress was trying to cut funding to dialysis centers resulting in a loss of services and personnel. Too many of my clinic mates were unable to fight back. Out of love and respect for people like my dad, I vowed to advocate on behalf of all kidney patients.

    My advice

    To aspiring advocates: Follow your passion, we can teach you the rest. We cannot give you heart. Either you have it or you don’t. If you have the passion to fight for your fellow PKD patients, welcome to the club!

    To someone recently diagnosed with PKD: Learn all you can and ask questions of your healthcare providers and kidney patients who have more experience than you. Become your own best advocate because, ultimately, we’re all a little different and you must learn what works best for you as an individual patient.

    Helpful resources

    PKD Foundation: It’s given me a voice, an outlet, a channel for my thoughts, and a way to speak and write about my experiences with polycystic kidney disease.

    Other resources: The PKD Foundation website has been a constant source of inspiration for me. My relationships with the NKF, AAKP, AKF, DPC, and the CDC are constant sources of information. My recent experience with Kidney/Solutions has been meaningful.

    Andrew Newhart

    District of Columbia

    My PKD experience

    My family first became aware of polycystic kidney disease (PKD) when my maternal grandfather, William Spillane, passed away from complications of the disease in 1964 at the age of 32. He was the first patient in Rochester, New York, to receive dialysis. My mother was then diagnosed with PKD and has suffered through years of difficulties: a few stints of dialysis and two kidney transplants (one from her sister, Maureen McCarthy, and one from a deceased donor). Two of my three older brothers and I were diagnosed with the disease shortly after I turned 18. I’ve been lucky so far in my journey that my kidney function has stayed normal, and I’ve remained healthy. I also started taking Jynarque (tolvaptan) over two years ago in an attempt to slow the progression of the disease. I’m happy to lend my voice to the Advocacy Champion Network and to do my part in helping find a cure for PKD.

    Family with PKD

    William Spillane (grandfather, deceased), MaryEllen Newhart (mother), Matthew Newhart (brother), and Brendan Newhart (brother).

    Being an ACN Champion

    What it means: Being an advocate means that I can share my experience with PKD to help persuade members of Congress to help fund PKD research and other legislation of interest. Being a lobbyist for my profession, I know firsthand how much real-life stories from constituents can truly make a difference while advocating.

    The moment: As soon as I saw that the PKD Foundation needed help in their advocacy, I knew I wanted to be involved. I wish I would have joined earlier!

    My advice

    To aspiring advocates: Submit an application and join us!

    To someone recently diagnosed with PKD: Do your research! There is a ton of information out there about the disease; it can be scary at times, but it’s helpful to be educated. I would also say to find a nephrologist and start having regular appointments — even if your labs are good now — you want help keeping them that way.

    Helpful resources

    PKD community: It’s helpful to know that there are people out there doing the work to advocate on behalf of me, my family, and others suffering from this disease.

    Alix Piccirilli

    Virginia

    My PKD experience

    Our son was five when I asked his pediatrician for advice about bedwetting. After referrals and testing, doctors told us he had ARPKD. I’d never heard of PKD and I didn’t know anyone who had it; I was shocked and devastated. We traveled to D.C. to meet with Dr. Guay-Woodford who was wonderful and helped explain our son’s condition. He is now nine and doing very well. Since his diagnosis, I’ve looked for ways to volunteer, fundraise, and connect with other families. The PKD Foundation has been a great way for me to get involved and feel like I’m helping work toward finding treatment and a cure for my son and others impacted by this disease.

    Family with PKD

    My son (age 9), Ian, has ARPKD.

    Being an ACN Champion

    It’s so important for me to be an advocate not only for my son but also for others with PKD. I always try to engage others and explain why I am passionate about PKD, how they can help, and get them excited about collaborating on a common goal. Whether it’s fundraising, the ACN, working with doctors, or supporting other families, I want my son to understand the importance of working with others to make strides toward the common good.

    My advice

    To aspiring advocates: Try it! There are so many ways to get involved and advocate for PKD causes, you never know which ones you’ll enjoy the most, how much fun they can be, or who you’ll meet! You may also discover a new talent or skill but you won’t know until you try.

    Helpful resources

    PKD Foundation: Volunteering with the PKD Foundation has really helped me feel like I am part of a larger community working toward the same goal. I’ve met so many amazing people through the Foundation and it’s given me a way to channel my energy into something positive.

    Other resources: I’m part of the PKD in Children Parents Chapter and the ARPKD Facebook groups.

    Sean Piccirilli

    Virginia

    My PKD experience

    My son, Ian, was diagnosed with ARPKD at age five. A “routine” pediatrician visit for bedwetting led to a very unexpected diagnosis, as we have no family history of kidney disease. Over the past four years, I’ve been amazed and inspired to see my son’s resilience as he has adapted to his new normal—learning to care for his body and taking his medication to help manage his condition. 

    Family with PKD

    My son, Ian, is living with ARPKD.

    Being an ACN Champion

    What I’m excited about: I’ve enjoyed our monthly meetings which have helped me realize that we’re truly a part of a community. I’m most excited about the opportunity to represent those affected by PKD during our upcoming engagements with members of Congress and their staff. 

    What it means: Being an advocate means being a voice for all of those who’ve been affected by this disease who haven’t found their voice yet. It means raising awareness among our elected leaders that there are countless people in their districts and across this country who stand to benefit from the funding that holds the key to unlocking a cure for PKD. 

    The moment: My wife, Alix, was an ACN champion last year and I had the opportunity to observe one of her virtual interactions with our Congressman’s staff. I was impressed by the knowledge and the passion that she and the other advocates demonstrated and was inspired to learn more about how I can contribute to the PKD Foundation’s mission. 

    My advice

    Helpful resources

    PKD Foundation:

    Other resources:

    Patti O’Grady Ruffin

    Texas

    My PKD experience

    I was diagnosed at age 16 in a “family screening” with Dr. George Schreiner at Georgetown University Hospital in 1970. Routine checkups were done since my father had PKD. After graduating from Washington School for Secretaries, a big “Godwink” was Dr. Schreiner who was seeking a person to work with his physicians in dialysis and transplant. From 1973 to 1981, I worked with these nephrologists and looked at patients with all types of kidney diseases. Little was known about PKD then. In 1981, I moved to Texas and worked for the chairman of medicine at UT Southwestern who was a brilliant nephrologist. My career continued with administrative and patient care positions in Dallas and later at UT Health San Antonio. I had many kidney infections requiring hospitalizations; issues with large liver cysts that had to be drained multiple times; pain in kidney/liver; and hypertension. Though within the university setting, I had excellent care. I began dialysis while working full-time in 2003, and in 2005, a career change led me to a coworker willing to be my donor so I had my transplant on December 15, 2005 with a bilateral nephrectomy and my left lobe liver resected. I’ve lost five family members before the age of 55. My brother has been transplanted for 18 years; a younger sister received a transplant in 2021 with a diagnosis of cancer. I retired at age 54 (in 2009) and I knew it was my job to volunteer as a San Antonio Walk for PKD Coordinator. I’ve advocated with the PKD Foundation on national and state levels. It’s just the right thing to do as we work together to #endpkd.

    Family with PKD

    My paternal grandmother, father, two uncles, and two sisters lost their battle to PKD in their mid-50s. My brother is 18 years post-kidney transplant and my youngest sister received a kidney in April ’21 with multiple complications post transplant. She lost her battle with PKD in September 2022. I was on dialysis for two years while working at UT Health San Antonio where I met a new coworker, Julie, who donated a kidney to me on December 15, 2005. I had a bilateral nephrectomy and left lobe liver resection at the same time. I’m now 17 years post-transplant.

    Being an ACN Champion

    What I’m excited about: The connections being made through ACN has allowed us to connect with legislators to share our stories. It’s been a pleasure to meet other advocates and to hear them share their journey/connection with PKD as we work together to #endpkd.

    What it means: Empowerment to those willing to listen to our stories, our needs, and our desires for a better future for all living with PKD.

    The moment: As a long-time volunteer with the PKD Foundation, it was a no-brainer to connect with advocacy opportunities.

    My advice

    To aspiring advocates: Tell your story, especially if you can do it person to person. I don’t know how many times a potential sponsor for the San Antonio Walk for PKD has said, “I read your story and I/we want to help.”

    To someone recently diagnosed with PKD: Be proactive for your own health and for your family’s well-being. I always recommend the PKD Foundation and social media pages connected with PKD for information. We’re not alone in our journey; we’ve come a long way but the battle has not been won—yet!

    Helpful resources

    PKD Foundation: My friends and family were impressed with my op-ed that was published! They then became our “co-advocates” writing to legislators for the Living Donor Protection Act.

    Other resources: The PKD Foundation is the biggest go-to with information that isn’t biased. I suggest the PKD Foundation and the PKD Chapters’ social media pages; the others living with PKD and Sisterhood are helpful for sharing helpful hints/suggestions of living with PKD – while monitored, think they could be scary for those living with PKD.

    Catherine Macfarlane Sjostedt

    California

    My PKD experience

    At 10 and a half months I was diagnosed with a Wilm’s Tumor and my right kidney was removed. I grew up with one kidney, and as a teen and adult, I’ve supported children’s cancer initiatives at Children’s Hospital in Seattle where I grew up. I volunteered as a newsletter editor for a children’s cancer group in UT and I was a counselor one summer at a children’s cancer camp in Washington. During a routine exam in 2004, my doctor felt cysts on my remaining kidney, and a CT scan confirmed PKD. This was on the eve of a move, so the doctor suggested I find a nephrologist in my new state. I was especially fearful about what this diagnosis would mean with only one kidney. It took me some time to find the PKD Foundation. I was inspired by the stories in PKD Life. I read books by PKD advocates, blogs by patient Valen Keefer, and I felt supported by the PKD community. I tracked my sonograms and bloodwork and became aware I have a measure of control through lifestyle changes. When the opportunity appeared to be considered for the ACN, the questionnaire asked if I had any advocacy experience. I honestly replied that I had only one kidney and PKD so I thought I had a pretty good story. Taking my story, and learning the story of the other advocates in my state, has made me especially aware of how powerful combining facts about PKD and personal stories can be for legislators and members of Congress and their health staffers. I’m not sure where my PKD story will go, but I continue to broaden my knowledge and empathy and work hard to craft messages that will affect change for others.

    Family with PKD

    None that I know of.

    Being an ACN Champion

    What I’m excited about: Advocating for those with PKD in ways that impact knowledge, equity, policy, and legislation is meaningful to me. I’m grateful to be part of a dynamic group from California;we’ve worked together to craft and hone our message and practice our presentation for maximum effect. Having access to a nationwide network of advocates expands resources and connections for positive change.

    What it means: While having PKD means I seek to improve my own health and wellbeing, being a member of the Advocacy Champions Network affords me the opportunity to broaden the scope, to educate, and to advocate in a powerful way for my community. Effective messaging to Congress and representatives can effect change.

    My advice

    To someone recently diagnosed with PKD: Getting a PKD diagnosis in 2004 was especially troubling to me as I have only one kidney due to a childhood tumor. Finding a community of others offered support and inspiration. The PKD Patient Handbook, webinars, and conferences are a great way to learn what’s going on in the world of kidney health. Build a strong relationship with a nephrologist, internist, and health team. Don’t underestimate the importance of access to a renal dietician. Monitor your blood pressure and bloodwork and embrace lifestyle choices that support kidney function. Reach out to others in the community for support and to effect change.

    Helpful resources

    I’ve benefitted from checking the PKD Foundation website and other kidney-focused websites in the US and beyond. Learning about research on dietary interventions interests me and has motivated me to shift to more plant proteins.

    Tamara Y. Walker

    Georgia

    My PKD experience

    I was born with autosomal dominant PKD. At the age of 12, I was diagnosed with hypertension and experienced urinary and female issues throughout my teen and young adult years. At 25 I was diagnosed with PKD after giving birth to my 2nd son. The constant urinary and kidney infections, ruptured cysts, and decline of kidney function caused me to be uprooted over 300 miles away from my birthplace to a southern town in Georgia. PKD forced me to move near my supportive family so that I may seek a life-saving kidney transplant. It is there that I experienced dialysis, kidney cancer, the removal of both PKD kidneys, and then receiving a successful deceased donor kidney transplant in 2014.

    Family with PKD

    My cousin, Kelly Walker, passed away from complications from a surgical procedure to remove his PKD kidneys.

    Being an ACN Champion

    What I’m excited about: The most exciting part of being an ACN Champion is virtually connecting with our elected officials and leaders. We educate our leaders, share our own PKD experiences, and advocate for funding and research for PKD.

    The moment: I realized I wanted to become an advocate when one of my family members passed away from complications from the surgical removal of his PKD kidneys. He’d started dialysis, been evaluated for the transplant list, and suffered the same debilitating pain that most of us had already experienced. That’s what provoked me to become an advocate and share my experience with PKD, dialysis, and transplantation.

    My advice

    To someone recently diagnosed with PKD: I recommend that someone who’s been recently diagnosed check out the PKD Foundation’s website. There are numerous resources, educational facts, and materials to download and educate yourself on the effects of PKD. For starters, you can download the “Patient Handbook” in the education section of the website. You can also connect with other individuals affected by PKD in social media groups. Just know that you’re not alone.

    Helpful resources

    PKD Foundation: The ACN has given us a platform to let our voices be heard. We inform our elected officials of the manner in which PKD affects our daily lives. We, the constituents, share real-life experiences and our voice regarding this disease may impact and influence laws affecting the PKD community. The ACN trains us on how to be effective advocates and how to properly connect and influence our elected officials.

    Other resources: The PKD Patient Handbook that can be found on the PKD Foundation website. Living with PKD Facebook group on social media, and the American Kidney Fund Website.

    Jim Woods

    Illinois

    My PKD experience

    My story includes a diagnosis in my mid-40s (not a surprise with my family history), becoming an active member in the PKD Foundation, learning lots more about the disease through the Foundation and other resources, using exercise to improve the way I feel, working with my nephrologist to understand my personal progression, and feeling more engaged by being part of the ACN.

    Family with PKD

    No

    Being an ACN Champion

    What I’m excited about: It was exciting to receive a proclamation for the State of Illinois for PKD Awareness Month!

    What it means: Being an advocate makes me feel engaged, hopeful, and empowered to make a difference in attacking this disease.

    The moment: When the ACN was established.

    My advice

    To aspiring advocates: Find a way to make the time.

    To someone recently diagnosed with PKD: Everyone is different in their journey, and there is hope in finding a cure and theraputics.

    Helpful resources

    PKD Foundation: Makes me feel that I can help in finding a cure and improving the quality of life for my family and my community.

    Other resources: Websites: PKD Foundation, National Kidney Foundation, The Kidney Dietitian; Facebook Group: LIVING!! (on dialysis); in addition, (1) daily exercise sessions and listening to my favorite podcasts have been helpful for my physical and mental well-being, and (2) participating in several studies and surveys has helped me feel like I can make a difference in this community.

    Devan Woody

    North Carolina

    My PKD experience

    The furthest back I can officially trace PKD in my family history is my grandfather. I suspect my great-grandmother also had the disease but cannot be sure. My grandfather didn’t know he had PKD until late in life when his kidneys failed, and he was placed on dialysis. He passed on the disease to two of his three children, one of which was my father. My aunt didn’t pass PKD on to either of her children, but my sister and I both inherited it from our father. My family has been lucky so far to have had a few serious issues due to PKD. There have been some health scares, but for the most part, we’re doing okay. I found out that I had PKD in high school after having an MRI for a back injury. I currently have few symptoms aside from occasional discomfort, but my father’s kidney function has started to decline faster. PKD, and other health issues I faced growing up, led me to have interests in science and medicine. These interests led me to study biology, and I aspire to one day attend medical school. After graduating from WCU last spring, I’ve worked as a dialysis technician, and many of the patients I see have PKD. I’m excited to be a part of the ACN and to be able to share my story. Together, I believe we can create a brighter future for all those affected by PKD!

    Family with PKD

    Being an ACN Champion

    What I’m excited about: I’m really excited (also a little nervous) to begin reaching out to my members of Congress!

    The moment: When my father participated in the tolvaptan (Jynarque) trails, he told me he was doing so for my sister and me. He was aware there was some risk involved but continued because he wanted to help create a brighter future for his children. My father’s actions inspired me and my sister to begin becoming involved with the PKD community and have eventually led me to the ACN.

    My advice

    To someone recently diagnosed with PKD: Learning more about this disease and interacting with others who share it can really help.

    Helpful resources

    The PKD Foundation has a lot of great info and services.