Newest NKI-ASN Grant Recipient June 29, 2015 by Kylie Karley NEWEST NKI-ASN GRANT RECIPIENT: DR. AZELOGLU We would like to officially congratulate Dr. Evren Azeloglu, the newest recipient of the NKI-ASN Grant. Dr. Azeloglu is an Assistant Professor in the Department of Pharmacology and Systems Therapeutics at the Icahn School of Medicine at Mount Sinai. He was originally trained as a mechanical engineer, but later went on to receive his Ph.D. in Biomedical Engineering from Columbia University. In 2010, Dr. Azeloglu was awarded the Howard Hughes Medical Institute Fellowship from the Life Sciences Research Institute. His background in biomechanics and systems biology is uniquely positioned to study complex diseases such as hypertension and diabetic nephropathy. He aspires to design transformative therapeutic tools using nanotechnology and tissue engineering. The title of Dr. Azeloglu’s project is “mechanosensitive control of podocyte cytoskeleton and remodeling.” Hypertension is one of the major drivers of kidney disease. However, the physical mechanisms through which high blood pressure affects nephrotic syndrome are not well known. Dr. Azeloglu plans to utilize engineering methods to investigate the structural properties of the cells of the kidney glomeruli during healthy and diseased conditions. This project will be conducted in hypertensive animal models with a nanotechnology platform. He will explore how kidney cells retain their structural integrity against mechanical injury (i.e. due to high blood pressure) and identify potential genes that may be responsible for maintenance of the healthy cellular structure under hypertension. This project aims to use state-of-the-art bioinformatics and nanotechnology tools to link the structural integrity of glomerular cells to overall kidney function. The results of his research may directly translate into treatable drug targets that can improve the resilience of kidney cells against high blood pressure, and slow down the progression of chronic kidney disease.
Advocacy in Action: More Funding for FSGS Research! June 16, 2015 by Kylie Karley Remember When… Back in January, FSGS was officially added to the list of conditions eligible for research funding through the Department of Defense’s 2015 Peer Reviewed Medical Research Program (PRMRP). This opened up a new $247.5 million funding source for FSGS researchers. When NKI and our patient families visited Washington DC earlier this year, we advocated to keep FSGS on the list and to increase the funding available for research. More Good News: Last week, the Senate Appropriations Committee approved the 2016 Defense Appropriations budget including $31.2 million in additional funding for the Peer Reviewed Medical Research Program. FSGS made the list of eligible conditions again, so if the bill passes without changes, our researchers will have access to $278.7 million in 2016! What’s Next? The bill will have to be passed by the House and Senate and signed by the President before going into effect. We’ll be tracking it and keeping you updated as it moves through the legislative process. Thank You! Increased funding for research and including FSGS on the list of eligible DOD conditions were two of our “Asks” when we visited Capitol Hill. Thank you advocating in person, writing letters and emails, and making phone calls to increase government awareness of Nephrotic Syndrome diseases and the vital role that government funding plays in finding better treatments and cures! Keep it up and stay tuned for more opportunities to be an Advocate!
Texas Clay Pigeon Shoot Fundraiser- Saturday May 9th in Lindale June 15, 2015 by Lauren Eva On Saturday May 9th, 2015, the Texas Clay Pigeon Shoot held by Baits, Balls & Clays raised $12,000 for Nephcure! Practice shooting and dinner with a live band (Bo Brumble) was held on Friday May 8th. The shoot was held on Saturday May 9th. Check out the photos below: Christian Family with Chad Grubbs (far right) Ashley Christian (Olivia’s mom) and Olivia Christian with Chad Grubbs talk to the crowd about Olivia’s struggles with FSGS [Best_Wordpress_Gallery id=”7″ gal_title=”Texas Clay Pigeon Shoot”] About Baits, Balls & Clays: In 2012 a group joined together to find a creative way to host multiple events that would help donate to charity. They called themselves Baits, Balls & Clays and the charity they selected was Nephcure. In their first year, Baits, Balls & Clays held a golf and fishing tournament, followed by the addition of a clay shooting tournament in the following year. Through their first 3 years Baits, Balls & Clays managed to raise around $20,000, which they donated to Nephcure. In 2013, a special little girl named Olivia was selected as an honorary member of Baits, Balls & Clays, becoming the face of the organization. About Olivia: Miss Olivia is 4 years old and a victim of a rare incurable kidney disease called FSGS. She and her twin sister were adopted into a family when they were young, gaining a mother, father, and 3 older brothers to watch out for them. Unfortunately, a few months after the adoption, when Olivia was only 16 months old, she was diagnosed with FSGS. Her illness caused the filters in her kidneys to stop working, spilling proteins into her body and causing massive swelling. The swelling had dire consequences for Olivia: she stopped walking, talking, playing, eating, smiling, and eventually stopped breathing on her own. In order to stay alive, Olivia went on dialysis and life support. Olivia was fortunate enough to survive with the help of a fighting spirit, and many supporters praying for her. Eventually with the help of various medications, she was stable enough to return home. Before her 3rd birthday, Olivia had undergone 7 surgeries and 12 hospitalizations. She has taken over 40 different medications in an attempt to treat her illness and keep her stable. Unfortunately, due to the lack of research regarding her rare disease, Olivia would be more likely to survive the most common form of childhood cancer than she would ESRD (End Stage Renal Disease), which is a common fatal outcome for patients like Olivia with FSGS. With supporters, Baits, Balls & Clays can continue to raise funds for desperately needed research through the Nephcure Foundation, which is committed to giving 9 out of every 10 dollars raised specifically to research for FSGS and its less aggressive form, Nephrotic Syndrome. Olivia and her family
Test The New ‘My Kidney Buddy’ Mobile App! June 15, 2015 by Kylie Karley Are you buried in paper from all your doctor visits? Ditch the binder- there’s an app for that! As part of the NephCure Kidney Network Patient Registry (www.nephcurekidneynetwork.org) we are developing a mobile app that makes keeping track of your paper medical records a thing of the past! My Kidney Buddy conveniently tracks crucial information such as new symptoms, current medications, and lab values and allows you to easily access them on your smartphone. Additional features include a graphing function so you can better track changes in your lab values over time. The My Kidney Buddy diary feature also allows you to track changes in your diet or if new symptoms occur. Coordinating your care can be complicated and it is important that you and your physician have all your important medical information available. By using My Kidney Buddy, you can be sure that your important health information is recorded and can be easily relayed to your physician… all without the hassle of carrying a heavy binder! We are looking for ‘beta testers’ to try this application and give us feedback on your experience prior to its release to the general public- and we need your help! Help us help you by testing My Kidney Buddy today! Email Chelsey Fix at cfix@nephcure.org for more information.
Genetic Findings from an NKI Funded Researcher June 5, 2015 by Kylie Karley In 2014, NephCure Kidney International and the ASN Foundation for Kidney Research awarded Dr. Heon Yung Gee with a Young Investigator Grant. Dr. Gee is a physician-scientist at Boston Children’s Hospital who focuses on the genetic causes of nephrotic syndrome. With NephCure and ASN support, he is conducting research on how mutations in KANK2 and ARHGAP4 cause defects in the proteins that cells use to communicate. Lack of communication causes problems with podocytes—the part of the kidney that likely plays a big role in causing nephrotic syndrome. Recently, Dr. Gee published an update on this research in the Journal of Clinical Investigation. Thanks to Dr. Gee’s research, the Hildebrandt group has added KANK 1, 2, and 4 to the genetic test used to influence the treatment of nephrotic syndrome patients. As of now, this test includes approximately 30 genes, which if mutated, are known to cause nephrotic syndrome. To learn more about genetic tests, stay tuned for an upcoming NKI monthly newsletter. Dr. Gee’s research has also led to new tests, which can be used to screen for drugs that may provide a treatment for some patients with steroid-resistant nephrotic syndrome. To learn more about Dr. Gee and other NKI-funded researchers, visit: https://nephcure.org/research/nephcure-funded-research/. To read Dr. Gee’s article in the Journal of Clinical Investigation, click here: http://www.jci.org/articles/view/79504.