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May 2024 Newsletter

Take Action with ASF’s Online Advocacy Tool

With just a few button clicks, you can join ASF in supporting The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), bipartisan legislation prioritizing early intervention, access to better treatments, patient and physician education, and research for all renal patients.

By clicking the purple “TAKE ACTION” button near the bottom of our customized advocacy alert website, you’ll have the opportunity to quickly search for your local legislator based on your home address. ASF’s new Congress Plus software will then allow you to send a pre-drafted, editable letter of support or thank you letter, based on your legislator’s stance on the bill.

This advocacy tool is open to all those in the United States who would like to help advance kidney disease care. Patients and family members are encouraged to include details about their personal connection to Alport syndrome when drafting their emails.

ASF extends gratitude to 2024 Patient Advocacy sponsor, Travere Therapeutics, for allowing us to provide this new method of legislative advocacy engagement and raise our collective voice.

Join Us!?

Navigating Care as Women with Alport Syndrome

Wednesday, May 29th, 2024

4:00pm Pacific / 7:00pm Eastern

Click here to register.

If you are an adult woman with any genetic type of Alport syndrome, consider participating in our next Direct Connect to share and discuss your diagnostic journey, experiences navigating the complex health care system, and the lasting effects of the “carrier” myth.

To encourage open conversation, Direct Connect events are live and not recorded.

Patient Registry Update + Important Reminders

ASF is pleased to share we are just shy of 400 participants in the ASF Alport Patient Registry. Thank you to all those who have chosen to help advance our understanding of Alport syndrome.

A few important reminders for those who have enrolled:

  • Enrollees will receive reminders (to the email address they registered with) from “[email protected]” approximately every 6 months from the onset of registration alerting them to update lab values and other important health information. Even if you or an enrolled child had no changes in the past 6 months, you are encouraged to review your data and resubmit the pre-populated answers to remain an active participant.
  • JPEG, PNG, or PDF files of audiograms and genetic testing reports can be uploaded at any time. Audiograms for those without detectible hearing loss are still valuable for comparisons over time.
  • Note to parents/caregivers: If you have enrolled a child (or children) in our registry since March 2022 and they have reached 18 years of age since then, please encourage them to enroll as a new member of the patient registry using this link. A unique email address (not associated with the user’s parent/caregiver account) will be required for the adult child to enroll.
  • Lastly, aggregated and deidentified data indicates a small number of individuals have not completed the required consent form (a prerequisite for viewing surveys and submitting health data) and are therefore not fully enrolled in the registry. If you began the enrollment process and did not complete the online consent, please check your inbox for instructions sent from “[email protected].”

Questions about the registry? Contact ASF Staff.

Recently Published Alport Research

Our website includes a routinely updated listing of research articles published in various scientific journals.

Research Director, B. André Weinstock, PhD, MSAS, graciously provided layman’s summaries of three recent articles centered on stem cell use in mouse models, genetic testing, and the diversity in Alport patient genotypes/phenotypes.

Click here to read brief summaries of these three articles.

Updated Site List for Natural History Study

Collecting and studying human biological samples of patients over time is one of the most important ways to drive the development of new clinical trials.

NEPTUNE’s Natural History Study in Alport Syndrome, funded by Alport Syndrome Foundation, can be transformative for our community.

ASF is grateful to the 47 enrolled patients who are advancing research through their ongoing participation at one of the 24 actively enrolling sites in the United States.

Participation entails several in-person and virtual visits over time. Patients will meet with a nephrologist with Alport expertise at one of the participating study sites. Stipends are available through ASF to help offset any study-related costs (travel, etc.). You can contact us for more information at [email protected].

Mental Health Resources

As May is Mental Health Awareness Month, we wanted to remind the larger Alport community that our website includes numerous updated resources on this critically important topic. This includes documented Alport patient experiences, areas of support (such as our moderated Facebook Support Group), and ways to find professional help.

If there are additional resources that you would like to see, please feel free to reach out to us!

View our Newsletters and Announcements page for an archive of prior communications.