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January 2025 Newsletter

Alport Connect 2025: Reserve Your Spot!

ASF is excited to announce that we will be holding our next in-person patient and family meeting, Alport Connect 2025, on July 19 & 20 at the Hilton Chicago/Oak Brook Hills Resort & Conference Center!

Saturday, July 19th will focus on a full day of engaging education for adult patients/caregivers and separate age-appropriate programming for teens ages 13-16 and 17-19. Sunday, July 20th will focus on social activities with time to connect and make lasting bonds with fellow Alport families. More programming details will become available as the event gets closer.

Enjoy learning from medical experts and from other patients/caregivers. For many families with patients of all ages and stages of disease, Alport Connect is a game changer. A few comments from last year’s event attendees include:

“Our first time here and couldn’t be happier with the social experience and education. Thank you!”
“We are all in this together…. To hear the variety of doctors, clinical trials, genetic testing companies and so many individuals working together for our community brings me a sense of peace and comfort.”

 

Please note that when reserving your ticket(s), you will be asked whether you’d like to be contacted about receiving partial travel/lodging stipends as they become available. Fill in ‘Yes’ on this area of your ticket form, and Staff will reach out to you directly on a first come, first served basis.

New Yorkers – Save the Date!

For adult patients and family members in the New York City area, we will also be holding a 1-day educational meeting on October 18th, 2025, in Midtown Manhattan. More details will be shared in a future newsletter.

New Emerging Leadership Council Members

ASF is pleased to announce the addition of four new members to our Emerging Leadership Council (ELC; clockwise from top left): Ben Rosengart, Brett Raisman, Rachel Denham, and Mack Bonebrake.

Each of these new members has been significantly impacted by Alport syndrome and seeks to use their unique skillsets to serve our community. As part of the ELC, they will help create patient resources, promote advocacy and awareness, support others in the community, and more!

Patients in their 20s and 30s are encouraged to contact the ELC to share their stories, learn about relevant ASF resources, and become further engaged within the Alport community.

Click here to learn more about the ELC or contact them by email at [email protected].

Medication Options After Kidney Transplant

ASF asked transplant nephrologist Dr. Alexander Wiseman to share his view on medication side effects and options after kidney transplant. Dr. Wiseman is the Executive Director of AdventHealth Transplant Institute in Denver, Colorado. He provided ASF with the following information for patients:

The standard-of-care medication regimen for kidney transplant recipients is tacrolimus, mycophenolate (either Myfortic or CellCept), and, for the majority of patients, prednisone. While this is a very effective regimen to prevent rejection, there are side effects that may be subtle but can also significantly impact your quality of life. Please be sure to discuss all of the potential side effects with your health care providers.

Join us! Alport Medications: Knowing Your Options and Advocating for Optimal Care

Connect with fellow Alport patients for a 60-minute moderated discussion about personal experiences with medications used to treat Alport syndrome. Whether you are recently diagnosed or have been aware for many years, you are encouraged to listen to and participate in this interactive conversation, which will cover commonly prescribed and newer Alport medications, side effects and tolerance, navigating insurance coverage, and tips for advocating for yourself in a health care setting.

Tuesday, February 11, 2025

5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern

Click here to register.

This Direct Connect meeting is specifically for patients ages 18+. To encourage open conversation, Direct Connect events are live and not recorded.

Critical ASF Alport Patient Registry Updates

Thank you to all who have enrolled in the ASF Alport Patient Registry to date! We now have over 530 participants and our data gets stronger with each new enrollee. If you haven’t enrolled yet, please see our ASF Alport Patient Registry webpage for more information about how to join and help support Alport research today. Please note that any messaging related to ASTOR, a university-based registry, is not associated with Alport Syndrome Foundation or our patient registry.

If you’ve already joined the ASF Alport Patient Registry, THANK YOU! We have some important updates for you below:

  • If your is child enrolled in the Registry and has turned 18 in the past 6 months or will do so soon, you should have received an email with instructions on how your child can connect their pediatric profile to a new adult profile. This is critical to continue capturing your child’s Alport journey and experiences over time. Once they turn 18, they are considered an adult and within a short time you will no longer be able to update their profile.
  • Entering your latest lab values, any new medications or changes in doses/side effects, and other new information about your experience is what makes the data in our patient registry so valuable. Please check your inbox for messaging from “[email protected]” and add this email to your list of contacts. We don’t want you to miss a chance to update your data, which occurs every 6 months.
  • If you are having any difficulties uploading your data into the Registry or you just have general questions, ASF is here to help! Staff will be hosting an open office hour by Zoom each week in February to help with any questions you have about the Registry. Just click the link below at a time that best suits your schedule, and we’ll be there to assist you:

Of course, feel free to email us with questions anytime at [email protected].

Importance of Genetic Testing in Kidney Disease

A workshop was coordinated by the National Kidney Foundation on Developing Guidelines and Advancing Genetic Testing in Kidney Disease, bringing together leading nephrologists, scientists, clinical geneticists, genetic counselors, ethicists, and patient advocates to consider recommendations for current practice.

In a recently published article, the Working Group outlined 56 recommendations on the benefits and risks, clinical decision-making algorithms for patient testing, and a road map for advancing genetic testing in kidney diseases.

Click here to read the full article summary, prepared by ASF’s Co-Founder and Board Member, Sharon Lagas.

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