Welcome to the
community
With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD.
Connect with us to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.
Jacksonville Health & Wellness EVent
On May 4, 2024, the Mayo Clinic Florida PKD Center of Excellence proudly hosted its first community event. This significant occasion convened patients, their families, and a multidisciplinary team to discuss the latest research advancements and the center’s ongoing efforts to develop new therapies. Dr. Fouad Chebib, Director of the PKD Center, delivered an insightful overview of the center’s current achievements and future vision. Following him, Dr. Abu Dabrh led a session on health coaching, focusing on setting health goals and managing the disease burden effectively. Attendees also participated in a therapeutic horticulture session and enjoyed a range of community-building activities, including food and music, all within a supportive and collegial atmosphere. Held in the Kinne Auditorium, the event highlighted the center’s commitment to empowering patients and fostering a supportive community.
Kidney Connect Community Event 2024
Kidney Connect, held on March 9 at Bethel Baptist Church, helped spread awareness about kidney disease which disproportionately affects black and African Americans. The event focussed on education around kidney disease prevention and activities that promote healthy lifestyles, such as dancing, physical activity for kids, and nutritious food options.
Kidney Connect was made possible with the support of 100 Mayo Clinic and community volunteers as well as organizations that provided key resources, including the PKD Foundation, American Heart Association, Blue Zones Jacksonville, Educating Minorities About Transplant, Florida Blue, LifeQuest, Multicultural Miracle Donor Foundation, Bethel Church and Volunteers in Medicine.
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Registration for the 2024 Walk for PKD is now open! Find your walk at walkforpkd.org. |
The PKD Foundation is excited to the announce the newest cohort of Centers of Excellence, Partner Clinics, and Pediatric Clinics. If you are looking for the right healthcare providers to help you manage living with PKD, visit our Centers of Excellence page to learn more about the program and to find a Center of Excellence, Partner Clinic, or Pediatric Clinic.
There’s a new way ADPKD Registry participants can step up to provide hope today, and for future generations. The nation’s first dedicated ADPKD Registry is now also one of the first patient registries of any kind to integrate patient-provided health records. Share your health records through your provider’s online portal with a few simple steps on the ADPKD Registry.
Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.
C. Nichole “Niki” Garvie
PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
Niki Garvie, BSN, BBA, RN is a mother of three girls and a Pomeranian, two of whom(the girls, not the Pomeranian) have PKD. After their diagnoses, Niki decided to change her career, went back to college for another degree, and ultimately became a registered nurse. Niki secured her dream job as a transplant nurse at Mayo Clinic. She considers herself a lifelong-learner and keeps active volunteering in her community. She was recently crowned Miss Freedom USA Woman, and her platform is organ donation, which stems from her knowledge that 85% of the 100,000 patients on the transplant list are kidney patients.
Photo Credit: Ryan Abelgas, Abelgas Photography
Walk for PKD Ambassador
Page last updated February 2024
