
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.

Amy Apprill
Massachussetts
My PKD experience
Family with PKD
Being an ACN Champion
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
Helpful resources
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
Family with PKD
Being an ACN Champion
My advice
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

Karen Solomon Edwards
Michigan
My PKD experience
Family with PKD
Being an ACN Champion
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 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
Other resources: PKD Foundation, NKF, AAKP.

Lainie Esquivel
California
My PKD experience
Family with PKD
Being an ACN Champion
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 someone recently diagnosed with PKD: Find the team of doctors who makes you feel heard, understood, and cared for!
Helpful resources

Glenn Frommer
Colorado
My PKD experience
Family with PKD
Being an ACN Champion
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 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
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
Family with PKD
Being an ACN Champion
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 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
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
Family with PKD
Being an ACN Champion
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
- 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

Nancy Kaminski
Pennsylvania
My PKD experience
Family with PKD
Being an ACN Champion
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
Helpful resources

Jeanette Knill
Wisconsin
My PKD experience
Family with PKD
Being an ACN Champion
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
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
Family with PKD
Being an ACN Champion
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 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
Family with PKD
Being an ACN Champion
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 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
Other resources: A personal dietician, ongoing daily exercise, and never feeling sorry for myself.

Timothy Miller
Georgia
My PKD experience
Family with PKD
Being an ACN Champion
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 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
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
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
Being an ACN Champion
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
Helpful resources
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
Family with PKD
Being an ACN Champion
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 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
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
Being an ACN Champion
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 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
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
Family with PKD
Being an ACN Champion
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 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

Alix Piccirilli
Virginia
My PKD experience
Family with PKD
Being an ACN Champion
My advice
Helpful resources
Other resources: I’m part of the PKD in Children Parents Chapter and the ARPKD Facebook groups.

Sean Piccirilli
Virginia
My PKD experience
Family with PKD
Being an ACN Champion
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
Other resources:

Patti O’Grady Ruffin
Texas
My PKD experience
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 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 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
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
Family with PKD
Being an ACN Champion
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
Helpful resources

Tamara Y. Walker
Georgia
My PKD experience
Family with PKD
Being an ACN Champion
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
Helpful resources
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
Family with PKD
Being an ACN Champion
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 someone recently diagnosed with PKD: Everyone is different in their journey, and there is hope in finding a cure and theraputics.
Helpful resources
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
Family with PKD
Being an ACN Champion
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.