Alport Connect 2024 – Save the Date
ASF’s patient and family meeting, Alport Connect, is returning in person in 2024. We wanted to let our community know the dates and location as soon as possible so you can plan to join us in Colorado this summer!
Additional details about this year’s event, including the venue, lodging options, and ticket reservations, will be made available in the coming weeks.
Similar to last year’s event format, we plan to provide a full day of education for adult patients/caregivers and teenage patients on Saturday, July 27th. The following day, Sunday, July 28th, will focus on social activities and time to connect and make lasting bonds with other attendees. We anticipate wrapping up weekend activities by 1pm on Sunday to allow time for travel.
We have prepared a 2-minute, closed-captioned recap video of last year’s Alport Connect event so you can see what it meant for so many patients and families to be together in person.
Staff and Leadership Council Expansion
ASF is excited to announce we have expanded our staff for 2024! Joining us are B. André Weinstock, PhD, MSAS, and Maddison Martin.
Dr. Weinstock has transitioned from a volunteer role on our Board of Directors to a part-time staff role as Research Director. With more investment than ever in our research pipeline, we know he will serve as an invaluable resource in helping ASF navigate this highly scientific and technical field.
Maddison has volunteered in the ASF community for more than 3 years, serving as a patient representative at various events and member of our Emerging Leadership Council. We are proud to have her as our new full-time Patient Engagement Coordinator.
Lisa Bonebrake will continue to serve as ASF’s Executive Director in 2024. Kevin Schnurr will oversee day-to-day operations in his new role as Managing Director, and Afton DeLucca will help meet the needs of our growing community in her new role as Associate Director.
ASF’s Emerging Leadership Council (ELC) has expanded to include two new members, Katelyn Massie and Dusty Atchison.
Katelyn has a passion for advocacy and is working toward a career in kidney disease research.
Dusty is a post-transplant patient who looks forward to using his experiences to assist others in our community.
Join Us – Patient Journeys
Connect with fellow Alport patients for a 60-minute moderated discussion about personal experiences living with 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 kidney health, hearing loss, and other aspects of the patient journey.
Tuesday, February 20, 2024
5:00pm Pacific / 6:00pm Mountain / 7:00pm Central / 8:00pm Eastern
This Direct Connect meeting is specifically for patients ages 18+. To encourage open conversation, Direct Connect events are live and not recorded.
Pregnancy Research in Alport Females
Although research on pregnancy in kidney disease patients exists, there is very limited information specifically about Alport patients.
A recent article by Gao et al. presents two case reports of pregnant females with autosomal recessive Alport syndrome who experienced increased renal symptoms during pregnancy. Ultimately, both women delivered healthy children and their kidney function returned to their pre-pregnancy levels.
On another pregnancy-related research note, Dr. Laura Perin of ASF’s Scientific Advisory Research Network is looking to connect with expectant mothers. To date, more than a dozen new mothers across the U.S. have kindly agreed to donate amniotic fluid for her Alport research. The collection of amniotic fluid during delivery is non-invasive and poses no risk for the mother or baby. Want to learn more? Contact ASF Staff.
Expanded Accessibility for ASF Resources
ASF is pleased to share we’ve added 21 additional languages to the translation tool on our website. Examples of new options, enabled by Google Translate, include Arabic, Hebrew, Korean, and Russian. All selections were based on our website traffic volume from countries with these native languages.
Anyone can access the translation tool to use our full list of 39 language options by clicking the “Language” button in the top right-hand corner of alportsyndrome.org, which appears as shown below. Mobile device users can click the three stacked vertical lines on the top right of their screen to access this same tool.
View our Newsletters and Announcements page for an archive of prior communications.