Building Awareness, Reaching More Families
September marked PKD Awareness Month, and the momentum continued throughout October as PKD-Free Alliance expanded its outreach, shared powerful family stories, and connected with more individuals affected by polycystic kidney disease.
Across September and October, we received 19 new grant applications, while pkdfree.org achieved a record-breaking 9,500+ page views in September alone. These encouraging milestones reflect growing awareness of our mission and increased engagement with the educational resources and support available to families affected by PKD.
We were also proud to be featured in Island Edge Business News, which highlighted the personal story behind PKD-Free Alliance's founding, our mission, and the experiences of families working toward a PKD-free future.
Our team also participated in three recent in-person events, connecting with patients, families, loved ones, healthcare professionals, and industry partners.
Melinna and Kevin were proud to represent the Alliance at the first-ever NYC Together for PKD Walk, organized by Dr. Heedeok Han (Clinical Director, Polycystic Kidney Disease Center at Columbia University). Over 120 attendees gathered for a morning of education and connection at Sutton Place Park, located adjacent to the majestic Queensboro Bridge. Bravo on a tremendous event, Dr. Han!
Kevin also attended the PKD Foundation's Long Island Walk for PKD at the Holtsville Ecology Site, connecting with dozens of local families and sharing information about the Alliance's mission and resources. Thank you to walk leads Gillian, Lillian, and Karleen for your hospitality.
Kevin participated in the Rogosin Institute's PKD Open House, attended by close to 100 PKD-impacted individuals. He led discussions on talking with family members about PKD and exploring reproductive options for a PKD-free future. Special thanks to Dr. Chevalier for his tireless dedication to the PKD community and for making this opportunity possible.
These recent gatherings served as powerful reminders that no one is alone in their PKD journey, and that coming together as a community creates meaningful opportunities for connection, shared understanding, support, and hope for the future.
We also extend a heartfelt thank-you to event attendees who visited our exhibitor table, signed up for our email list, and took home educational flyers to share with family members and healthcare providers. By helping spread awareness of the reproductive options and support available to families affected by PKD, you're playing an important role in advancing our mission and reaching those who may not yet know these options exist.
NYC Together for PKD Walk, held on October 4
Stories of Hope: 3 Families, 3 Perspectives
We recently added three moving family stories to our website, each offering a unique perspective on living with PKD and the importance of reproductive choice:
Alexia's Story: A mother's deeply personal journey with autosomal recessive polycystic kidney disease (ARPKD), loss, and hope for future generations.
A Grandparent's Hope: A Future Free from PKD: A grandmother's perspective on the impact of PKD across generations and the hope that reproductive advances offer families.
Kate and Ryan's Story: A family's journey toward welcoming their daughter, Charlotte, and the possibilities made available through IVF with PGT-M.
We encourage you to read and share these stories to help more families discover the information, support, and reproductive options available to them.
New Fertility Preservation Resource
Clinical trials are essential to advancing new treatments for PKD, but some investigational therapies may require participants to delay pregnancy or could have unknown effects on fertility. For individuals considering clinical trial participation, understanding the potential implications for future family-building plans is especially important.
Our new resource, Fertility & Family Planning Considerations Before Clinical Trial Enrollment, outlines key questions and considerations to discuss with your healthcare team before enrolling in a clinical trial.
We've also created a two-page printable handout featuring five key takeaways and important questions to ask your healthcare providers. The handout is available to download directly on the resource page.
Special thanks to Dr. Jovana Lekovich of RMA New York for her valuable expertise and contributions to the development of this resource.
Santa Barbara Nutrients: Recent Updates
Our friends at Santa Barbara Nutrients share highlights from their September PKD Awareness Month activities, including community education and international outreach.
Contributed by the Santa Barbara Nutrients Team
PKD Awareness Month was a busy and exciting month for the Santa Barbara Nutrients and Ren-Nu™ team.
One major highlight was our public virtual community event, which brought together more than 80 participants for an evening of education, discussion, and connection around PKD, nutrition, metabolic health, and current research. We were grateful to see such strong engagement from the PKD community and to have the opportunity to answer questions and share updates directly with patients and families.
Immediately afterward, members of our team traveled to Berlin for a renal nutrition conference, where we connected with clinicians, researchers, dietitians, and others working in kidney health. It was a valuable opportunity to continue building awareness around the importance of nutrition and metabolic health in kidney disease and to strengthen connections with the broader renal nutrition community internationally.
As we continue this outreach, we also want to remind the PKD community that Ren-Nu™, our nutrition and lifestyle program for people living with PKD, and KetoCitra®, our medical food designed to support metabolic health in PKD, remain available as resources for those interested in taking a more proactive approach to nutrition and lifestyle.
We are grateful to the PKD community for the continued support, engagement, and conversations that make this work possible.
Research Roundup
A study published in Journal of Neurosurgery developed a prediction model to identify ADPKD patients at greater risk of brain aneurysm-related complications. The findings could eventually help physicians personalize imaging surveillance, although further validation is needed.
Research published in JCI Insight found that pirfenidone, a medication used to treat certain lung conditions, reduced kidney scarring and improved kidney function in preclinical ADPKD models. Further studies are needed to determine whether these benefits extend to patients.
A small clinical trial published in Clinical Kidney Journal examined the effects of empagliflozin in 15 adults with ADPKD. Researchers observed changes in certain metabolic measures and blood pressure, although larger studies are needed to establish the medication's potential clinical benefits.
A study published in Kidney International Reports involving 416 ADPKD patients found that kidney cyst infections decreased following transcatheter arterial embolization, a procedure used to shrink enlarged polycystic kidneys. Additional research is needed to confirm the findings and determine which patients may benefit most.
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