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ASF Welcomes New Staff Member

We are pleased to announce the addition of Afton DeLucca as ASF’s new Patient Engagement Coordinator.

Afton has a degree in Professional Writing and has worked as an editor of scientific and medical publications for more than 15 years. In addition to being a patient herself, she is also the mother of a young son with Alport syndrome.

“After receiving my Alport diagnosis 12 years ago, I was fortunate to find and join the ASF patient community. From one of the first Family Meetings I attended many years ago, to the personal calls and emails I received offering guidance and support, ASF has done so much for me and I look forward to the chance to serve other members,” says Afton.

ASF Board Chair Andrew Kronenberg notes, “The Alport community has experienced unprecedented growth as a result of increased disease awareness and access to diagnostic methods. Afton’s personal and professional qualities make her an ideal addition to the ASF team, allowing us to meet the rising needs of fellow patients and families.”

To learn more, visit ASF’s Staff Page.

Alport Researchers Unite in St. Louis

A gathering of Alport syndrome researchers met last month as part of the American Society for Matrix Biology (ASMB) conference to present recent findings and gain insights to help with future work. The event was held in St. Louis, MO, the home of Dr. Jeff Miner, a member of ASF’s Scientific Advisory Research Network and ASF Research Funding Award recipient.

Dr. Jeff Miner’s laboratory at Washington University presented a new therapeutic opportunity called Read Through therapy, which has shown great promise in other diseases,

A post-doctoral researcher in Dr. Miner’s lab, Kohei Omachi (pictured) has found that in cellular models of Alport Syndrome, Read Through therapy may improve kidney cell function making it a promising new drug therapy for Alport Syndrome patients.

Emerging Leadership Council member Joseph Lagas attended the event on behalf of ASF and provided a summary of Kohei’s research at this link.

Graduate Student Aubrie Stricker of Vanderbilt University School of Medicine was the recipient of an ASF-funded Travel Award for the conference.

“My research focuses on basement membrane repair by identifying components that detect damage and initiate repair. Faulty basement membrane repair mechanisms can result in the progression of diseases such as Alport syndrome, therefore, understanding repair dynamics will be vital to treating diseases of the basement membrane. I am grateful for the Alport Syndrome Foundation Travel Award for funding my travel to the 2021 American Society of Matrix Biology conference.”

Young Patient Funding Opportunity: Deadline Nov. 12

The 2021 Paul Silver Enrichment Award is open to individuals ages 16 to 22 years old living in the United States and affected by Alport syndrome. The application deadline is Friday, November 12, 2021.

A minimum of $1,000 will be awarded to the winning applicant/s.

The Award is designed to help teens/young adults pursue their personal goals and interests. Funds can be used to purchase equipment, travel, or educational activities that will enhance the applicant’s life.

Our YouTube playlist includes testimonials from prior Awardees, some of which are pictured here.

Click here to learn more and apply for the 2021 Award.

Understanding Your Kidney Labs Q&A Recording

Click below to watch a closed-captioned recording of our recent 60-minute webinar “Understanding Kidney Lab Results” Q&A with Dr. Anjay Rastogi of UCLA and member of ASF’s Medical Advisory Committee. Dr. Rastogi reviews critical lab values (blood and urine) to help patients best understand their health status and communicate more effectively with their care providers.

Join Our Efforts to Sustain ASF (and Earn Swag!)

ASF’s 2021 Annual Campaign runs Monday, October 25th through Friday, November 19th.

Our Annual Campaign Supports:

  • Alport syndrome research
  • Keeping all ASF programs and services free of charge
  • Increasing ASF’s ability to meet the needs of our growing community

In order to reach our $125,000 goal, we are seeking a minimum of 20 Campaigners to create personalized fundraising pages and share them with their network of friends, family, colleagues etc.

ASF Staff can help create your customizable online fundraising page in just a few minutes!

Campaigners who reach specific fundraising levels beginning at $500 will be eligible to receive ASF-branded swag such as a hoodie, thermos, and/or an insulated tumbler.

Email [email protected] to learn more and register as a 2021 Campaigner!

You can support the campaign by visiting our online fundraising website.

Paid Alport Research Opportunity for Care Providers

We are encouraging Alport patients to share the following survey link with adult and/or pediatric nephrologists, your primary care physician, nurse practitioners, physician assistants, and RNs in nephrology. You may share the link by email, through your patient portal, or however you best communicate with your provider(s).

Health Care Provider Survey Link

Each Health Care Provider that participates will receive a $100 gift card for their time and input and will help advance understanding of the Alport journey. The gift cards are provided by HCB Health through National Kidney Foundation. Click here for more information about this survey project.