New Research on Preeclampsia in CKD
ASF Research Director, Dr. Andre Weinstock, attended the 15th International Podocyte Conference in Hamburg, Germany last week (June 11–14th) and noted important new research by Dr. Paula Romagnani of the Universitá di Firenze, Italy. Dr. Romagnani’s research focuses on the direct correlation of low podocyte cell counts to an increased risk for preeclampsia.
Podocytes are specialized filtration cells in the kidney that make and maintain the glomerular basement membrane filter, which is directly impacted by Alport syndrome (AS). Because podocyte injury is a well-known secondary symptom of AS, women with AS are therefore at greater risk for preeclampsia and should ensure their obstetrician and other treating clinicians are made aware. While it is well understood that preeclampsia induces kidney disease, it is less understood how kidney disease induces preeclampsia and causes a negative feedback loop.
Alessia Fornoni, MD, PhD, a clinician and researcher at University of Miami and ASF Medical Advisory Committee member, was also in attendance and noted, “It is extremely important that female patients affected by AS are aware of this and discuss the risks with their obstetricians and their nephrologists. Women with AS may plan or initiate pregnancy while already suffering from proteinuria and high blood pressure, making it extremely important to educate patients and care providers to recognize even subclinical changes suggesting that preeclampsia is imminent and receive proper monitoring.”
Dr. Romagnani’s research on this topic is yet to be published. For further reading and guidance, click here for a list of related journal publications or here for ASF’s Alport Syndrome and Pregnancy page.
4th Annual Cornhole for Kidneys Event
The 4th Annual Cornhole for Kidneys event took place on June 1st in Neenah, Wisconsin, hosted by Amy Rhodes — an Alport patient, mother of a patient, and a dedicated member of the ASF staff.
The event continues to grow each year, and this year marked the most successful yet, with a record 124 participants competing in the cornhole tournament and many more guests joining in to enjoy the day and show their support.
Thanks to the incredible generosity and enthusiasm of Amy’s community, the event raised over $42,000 this year — bringing the 4-year total to more than $127,000 in support of the Alport Syndrome Foundation’s mission. Every dollar raised helps improve the lives of those affected by Alport syndrome through education, empowerment, advocacy, and research.
Feeling inspired to make a difference? If you’re interested in hosting a fundraiser to benefit ASF, please reach out to our staff — we’d love to support you!
Preparing Teens with Hearing Loss for College
To understand the accommodations, access, and support needed to thrive both academically and socially, students can ask a wide variety of questions when starting at a new college/university. Accommodations provided by public and private high schools do not transfer to institutions of higher learning. It can take time to submit documentation and get services in place.
ASF spoke with several parents and students affected by Alport-related hearing loss who have gone through this process. Following are some of the questions they recommend asking a college/university you plan to attend:
- What types of accommodations are available for students with hearing loss?
- How do I request academic accommodations, and how early should I do so?
- Are classrooms and campus spaces equipped with assistive listening technology (real-time captioning for online classes/video, induction loops)?
- Does the school offer speech-to-text apps or software for students?
- Are dorms equipped with visual/vibrating alarm systems and other safety features for students with hearing loss?
- Can I get help advocating for my rights if I face barriers or accessibility issues?
- Are there scholarships or grants specifically for students with hearing loss?
- For students with hearing loss, are there approved alternative course options in place of foreign language requirements?
Additionally, please see a list of Differences Between High School and College/University Accommodations.
Last Call – Send Us Your “Living with Alport” Images!
We’re inviting you to share your image of what living with Alport syndrome looks like. We are collecting images from patients everywhere to share this summer at Alport Connect 2025, as well as with our wider community.
It can be a photo, drawing, or any other visual representation of what you would like to communicate about your life and experience living with our rare genetic kidney disease. We’ll put the images together in a video format and share them with you all.
Images will be kept anonymous. This is a public project, so we request visuals that can be shared with all ages.
Send one image to [email protected] and any necessary explanatory text, so we can show the world what our lives with Alport syndrome are like.
View our Newsletters and Announcements page for an archive of prior communications.