In 1927, Dr. Cecil Alport published a paper in the British Medical Journal in which he discussed his study of several generations of a family with what earlier physicians had called “hereditary familial congenital haemorrhagic nephritis." So how did this condition come to be named after Dr. Alport?
A proper diet is crucial to maintaining proper renal and overall health. Potassium is a very important mineral in the body that most individuals are only vaguely aware of until their renal condition declines and are told by their doctor/dietitian to limit its intake.
Over the past nine years, ASF has successfully created a landscape that encourages industry, academia and the government to invest in studying Alport syndrome. The result can be seen in the increased number of potential therapies “in the pipeline” to treat Alport syndrome.
In response to requests for more face-to-face interaction with other families affected by Alport syndrome, ASF has hosted several Alport Family Meetings in 2016. Participants have left feeling empowered and connected to the Alport community.
ASF is taking steps to better incorporate the patient perspective into our research goals. To better understand the daily and long-term impact that Alport syndrome has on patients and the main concerns patients have about the disease and its progression, we have created a survey.
Later this month, Tom Denham will face his toughest challenge, the aptly named Forbidden Peak, as he continues his commitment to support ASF by climbing toward a cure on his annual charity climb in honor of his daughter, Rachel.
The Alport Family Meetings (AFM) provide a unique opportunity for members of our renal community to meet and mingle with other families affected by Alport syndrome and simultaneously learn from the experts. Shannon and her husband attended our Los Angeles event (AFMLA) along with their son,
Registries are an important part of moving research in Alport syndrome forward. Dr. Michelle Rheault, the Co‐Director of the University of Minnesota’s Alport syndrome Treatment and Outcomes Registry (ASTOR) explains how registries work and why you should consider enrolling.
This is an exciting and busy time at ASF as many steps are being taken towards conquering Alport syndrome. While we are grateful for the lifesaving treatments of dialysis and transplantation, ASF is the only national organization dedicated entirely to finding treatments aimed specifically at Alport syndrome.