ALPORT CONNECT 2021 UPDATES
A few updates about Alport Connect 2021:
- 230+ patients, family members, and physicians from 8 countries have already registered to attend.
- Dr. James Simon of Cleveland Clinic will serve as a moderator for the live Alport Genetics Q&A session. Expert panelists include UCLA’s Dr. Anjay Rastogi, and professional renal genetic counselor Mary-Beth Roberts. Get your questions answered about interpreting genetic test results and more.
- Are you a visual learner? A professional sketch artist will join several of our sessions to capture key insights. Watch the artist sketch in real time. Final illustrations will be shared with attendees.
- Live, closed-captioned panel topics will also cover: disease progression and self-care in females, hearing loss technology and coping mechanisms, and how patients can participate in ongoing research efforts. Per your event feedback, a Patient and Caregiver Panel will return. All sessions are designed as Q&A sessions!
Questions about the event? Email ASF Staff
There is still time for you to claim your free ticket(s) to this year’s largest educational and social event for the Alport community! Register today!
THANK YOU to our ALPORT CONNECT 2021 SPONSORS:
CONGRATS TO PAUL SILVER AWARD WINNER HS GRADS!
Two of the 2020 recipients of the Paul Silver Enrichment Award, Lindsay Poe and Gabrielle Sawczyn, recently graduated from high school. We asked these hardworking, accomplished young women to share their plans for the future and how they view the impact of last year’s Award from ASF:
I graduated from Northwest Early College High School with my associate degree this past spring. This fall, I’ll be attending Texas A&M University with a full ride scholarship to study architecture. With the Paul Silver Enrichment Award, I was able to buy the laptop that I needed for my major. Without this Award, I don’t know how I would be able to complete my classes, so I am very grateful to have been selected!
I ended up missing the first half of Freshman year because of a life-saving surgery I needed due to my Alport syndrome with diffuse esophageal leiomyomatosis. COVID hit Junior year making me miss out on things like my first prom. Fast forward to Senior Year June 2021 and I walked across a little stage on a football field in Minnesota’s 100 degree weather and it all seemed worth it. I’m now preparing to pick up everything and move to Fargo, North Dakota where I’ll be studying pediatric nursing at North Dakota State University. With the Paul Silver Enrichment Award, I look forward to having a bit of the financial burden lifted as I start to take out loans and pay tuition.
LEADING RESEARCHERS ADVISE ASF
ASF’s Scientific Advisory Research Network (SARN) is comprised of eight leading international Alport syndrome researchers who provide expert guidance on how ASF can best achieve targeted research objectives. The SARN is currently addressing topics such as CRISPR/Cas9 therapeutic potential, application of “cutting-edge” microscopic and spectroscopic techniques for understanding Collagen IV histopathology, and creation of better animal models and monoclonal antibodies for Alport syndrome research. The ASF website was recently updated to include full biographies on SARN members.
Click here to learn more about this group of remarkable men and women advancing our understanding of Alport syndrome.
RECENTLY PUBLISHED ARTICLES & PAPERS
In a recent online article, The Department of Otolaryngology at Washington University School of Medicine featured Dr. Michael Anne Gratton and her laboratory’s 20-year collaborative Alport syndrome research. Using mouse models, Dr. Gratton’s lab recently “…explored the ability of various pharmacological agents to rescue or prevent the Alport-associated hearing loss and kidney dysfunction.” Funding for the project was provided by the National Institutes for Health and by Travere Therapeutics, Inc. Click here to read the full article
Dr. Clifford Kashtan of ASF’s Medical Advisory Committee is the sole author of “Multidisciplinary Management of Alport Syndrome: Current Perspectives,” recently published in the Journal of Multidisciplinary Healthcare. In this paper, Dr. Kashtan provides an Alport syndrome introduction and overview for clinicians who are not nephrologists. It also provides recommendations for treatment within those non-nephrology fields and when and how they should engage with nephrologists to ensure holistic Alport syndrome care.
ALPORT CLINICAL TRIAL: WEBINAR/Q&A JUNE 30th
Did you know an investigational drug called lademirsen is currently being studied to help protect kidney function in those with Alport syndrome?
Research indicates scarring in the kidneys involves microRNAs. Sanofi-Genzyme’s HERA Clinical Trial is being conducted to evaluate the impact of lademirsen on the reduction of MicroRNA-21 (miR-21) activity in humans. Lademirsen is administered as an injection beneath the skin, stopping short of the muscle.
ASF invited medical experts at Sanofi-Genzyme who designed this clinical trial to speak to the larger Alport community about this ongoing study and to answer patients’ questions:
Wednesday, June 30th at 9:00am Pacific / 11:00am Central / 12:00pm Eastern.
You can watch a closed-captioned recording of the June 30, 2021 webinar at this link.
There are 5 active HERA study locations in the United States. Home visit medical check-ins are a potential option for qualifying patients regardless of improvements in the COVID-19 environment. Travel assistance may be available to qualifying individuals. More info on the HERA Clinical Trial can be found on the ASF Website.
TEAM UP TO SUPPORT ASF!
TEAM ASF is designed to encourage individuals participating in competitive events to raise awareness and funding for Alport Syndrome Foundation while earning customized apparel!
Who Should Join TEAM ASF?
• Those participating in an organized competitive event
• Those organizing a new competitive event
Events can vary from a walk/run or sports tournament to a card game or dance competition, or anything creative in between. So, please walk, run, jump, dance, or play your way to supporting ASF and investment in research and educational programs.
Interested in fundraising independently of a competitive event?
ASF Staff can create a personalized fundraising page based on your needs! We respectfully request that you use our unique fundraising platform instead of others (such as Facebook) to ensure the maximum percentage of your donation is directed to ASF and we can properly track and, most importantly, thank our generous donors. Contact ASF Staff to get started.