Meet Our Mentors

I’m a 66 year old retired social worker. As a social worker, I’ve worn many hats, from supervising and managing housing programs to counseling and providing case management to older and disabled people and their families.

I learned of my PKD diagnosis at age 25 when my father started dialysis. I was fairly asymptomatic until age 40 when I began treatment for hypertension and at 60 had reached Stage 4.

I began a two year search for a living donor and after eight months of dialysis and was blessed with a compatible donor and transplant in April of 2017.

One of my goals in life is to help others who live life with this sometimes very debilitating disease. Becoming a peer mentor is one way I may be able to do that.

I am a 3rd generation PKD patient and lucky to have received a kidney at 73 and going strong. Volunteering as a peer mentor is important to me because I have a strong family history of PKD and have one child who has inherited the gene. It’s still an unknown disease for many people and there needs to be continued education about PKD and it’s implications for patients.

Hello! My name is Tasha and I was diagnosed with PKD when I was four years old. My family has a long history of PKD on my dad’s side and my dad received a transplant from my mom 17 years ago. My sister and I have the possibility of transplant looming on the horizon. I am currently hovering on the edge of stage 4 and have had a passion for being proactive in my disease process since I can remember! I have previously participated in two clinical trials and have been on Jynarque the past three years. However, I’m currently off of the medication in anticipation of screening for a new Phase 1 trial utilizing gene therapy!

PKD has made it unhealthy for me to have children, but I am a dog mom to three amazing fur babies. In my spare time I love spending time with them and my wonderfully supportive boyfriend, traveling with my family, and trying out new hobbies and interests!

I also love taking naps 🙂

Growing up my family and I participated in many Walk for PKD events and now I have started getting involved with the Foundation this year! I am currently a part of the Community Reaction Panel, the Advocacy Champions Network, and now looking forward to sharing my experiences and knowledge as a Peer Mentor! I’m excited to help others find hope in still living life and following their dreams, despite PKD!

My name is Theresa Hardnett, a volunteer with the Polycystic Kidney Disease (PKD) Foundation since 2009. I and all of my immediate family members, along with most of our children have PKD. My family lost our mother in 1997 at 54 years of age, my eldest sister in 2012 at 47 years of age and my brother in 2020 at the age of 53 to PKD. I was in the most recent trial study for Tolvaptan beginning in 2015 and ended in 2018. I am currently taking the new FDA approved drug JYNARQUE™ (formerly Tolvaptan).

I have a bachelor degree in Business Leadership and recently received a master’s degree in Counseling. I felt there was a need for support groups to serve those with PKD. Therefore, I have formed PKD support groups via the PKD Foundation’s Detroit Chapter.

I married my long time friend of over 20 years in 2014. I have one child, a son, yet am a godmother to 20 other children, and a great-godmother to their children. When my eldest sibling passed away in 2012, her youngest child (daughter) came to live with us in Michigan, from Maryland. It was a rough transition for us all, but we all made it through. Due to my experience with PKD and volunteering for the PKD Foundation, I thought what better way to help others in somewhat similar situations, than to become a peer mentor?

Michele Karl is a mom to three boys, her three peas. Max who is 21, Nate who is 18, and Gabe who is 15. Max and Gabe were diagnosed with ARPKD in 2006 after Gabe was born with echogenic kidneys. Michele has been involved with the PKD Foundation ever since. Luckily the boys appear to be on the milder side for ARPKD and currently are both hovering around the 70% range for kidney function. They both also have high blood pressure and Gabe has some mild liver issues. Michele is always available to talk to parents with children with PKD. Besides advocating for her boys Michele is a special education preschool teacher, loves gardening and reading, and likes to make jewelry with vintage objects such as typewriter keys.

Hi! My name is Annette Minnich. We have traced PKD back to my paternal grandmother. Mamaw passed PKD along to both of her children, my Uncle Paul, and Dad. Paul had four kids three with PKD. In my family there was just my big brother, Hal, and I. We both inherited it. I was the first one in my generation to get the diagnosis, in 1997. My brother and cousins all quickly followed.

It’s been a long time since that diagnosis. I am the last one to have my native kidneys still chugging along. All the rest are either at least ten years post-transplant, or sadly, deceased. I am also the only one who made lifestyle changes as soon as I got the diagnosis. Nothing too massive: I limit my protein intake, and make sure I stay hydrated. Lately, I’ve been eating mostly plant-based proteins, and that seems to be helping, too.

I am a semi-retired opera singer, while I still perform every so often, mostly I teach voice and piano. I am a past-President of NAMI Albuquerque. (NAMI is the National Alliance on Mental Illness, and I was the President of the Albuquerque affiliate for two years.) I am still active in facilitating groups and classes. In my spare time, I knit, crochet, sew and dabble in origami. I live with my husband, one of our three (adult) kids, three cats, and two dogs.

I am a wife, mom of two grown sons, and a former teacher. I was diagnosed with PKD in 1995 after the birth of my first child. I decided back then that I would take an active role in my health and do whatever I could do to slow down the progression of the disease. I have been in several studies, in a drug trial, and have stayed up to date on research and new treatment options.

Sometimes with a chronic illness, you might feel like you have no control over your own life. Taking a proactive role in my own healthcare has made me feel like I have taken back some of that control.

I love being a volunteer for PKDF! I love being a part of something that’s main purpose is to improve the lives of others. Whether it’s calling our donors to thank them for their support, advocating for funding for research, or simply educating others on this illness, volunteering has made me feel like I have a part in helping find a cure for PKD.

My journey with PKD began fifteen years ago, when I was diagnosed. My father was the first in his family to have this disease, and we recently found out that our son also has it. I am a strong believer in self-advocacy and learning as much as I can about PKD. I have attended National Conventions, state sponsored programs, and PKD walks, and have participated in several clinical trials, including the Tolvaptan study.

I have enjoyed being a PKD mentor and try to lend support and encouragement to people who are also experiencing this disease. On November 17, 2021, I received a preemptive transplant with my husband as my donor! Post-transplant I have become involved in the NJ Sharing Network, which promotes organ donation. Presently retired, I spent my career as a social worker and art therapist.

As a 2010 preemptive (live-donor) kidney transplant recipient, Risa considers herself to be an extremely blessed PKD warrior. Immensely grateful to her remarkable living kidney donor (who saved her from dialysis)—her luck didn’t end there. Risa was also gifted a chance to become a 2x kidney donor. (Not in the typical way, mind you). This gift came in a more fortuitous way, when her transplant team performed a double nephrectomy on the same day as her transplant. Risa gladly “gave up” her troublesome twins by donating them to advance PKD research for a cure.

Risa is best known for her contagious enthusiasm, inspirational coaching and powerful self-help books: “Shift Your Fate: Life-Changing Wisdom for Proactive Kidney Patients” and “In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors.” For more than a dozen years, Risa’s been marching forward to illuminate the path towards a better and longer life—the life she now lives. This is what she hopes for you.

My name is Jennifer Tompkins, and I am a PKD Connect Peer Mentor. I have been involved with the PKD Foundation for years, and have enjoyed the conferences I have attended. Being able to meet the medical staff and researchers who want to find a cure for PKD is inspiring and meaningful.

I had a Polycystic Liver Disease transplant in July 2018. I am very grateful to the donor and donor’s family. Someone made the choice to donate, and it greatly impacts me every day.

Through my journey of PKD/PLD, I have built relationships and learned from others about our disease. I am happy to be a mentor and pay it forward.

I’ve been a dedicated PKD advocate, fundraiser, and connector for many years. As a Walk Team Captain and team member of “Alotta Mazzottas,” my family and I have been proud to be one of the most active contributors to the PKD Foundation in the New England area. Together, we’ve raised over $150,000 to support critical research and community programs.

One of my favorite and most consistent fundraising efforts is a local restaurant event in my community. Through raffles, outreach, and dinner sales, I’ve raised more than $25,000. But for me, the most meaningful part of these events is the opportunity to connect with others living with PKD. I’ve formed lifelong relationships with newly diagnosed patients, post-transplant recipients, and caregivers alike. I knew I was on the right path when a woman who came to the restaurant just for dinner saw our posters and shared that she had PKD but didn’t know anyone else who did. I got her connected to the community—and now, she’s a powerful advocate and mentor herself.

In addition to fundraising, I serve as a peer mentor to newly diagnosed PKD patients, offering support and sharing resources from a patient perspective. I’m also involved with the New England Community of the PKD Foundation, where I help organize educational seminars and continue working to expand our outreach efforts.

I serve on the Patient Advisory Group at Tufts Medical Center, one of the Foundation’s Centers of Excellence, and I’ve participated in two clinical trials there. I’ve also taken my advocacy to Washington, D.C., representing the PKD Foundation twice and the National Kidney Foundation once to help advance policies that support kidney patients.

As an ambassador with the New England Organ Bank, I’ve spoken at local events, AAA offices, and RMV locations to promote organ donation. Living with PKD has shaped my life, but it’s also fueled my commitment to making sure no one faces this disease alone. I’m honored to use my voice and my experience to support others and drive change.