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.
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.
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.
Celina LaBrec-Salmons was the first person to register for the first-ever Alport syndrome Virtual Walk, which will be held on June 18. This is a national event to raise funds and awareness by encouraging people to participate in their own communities.
My first six weeks as ASF’s first Executive Director have been quite exciting. During that time, I have come to greatly appreciate the importance of raising funds and awareness dedicated specifically to conquering Alport syndrome.
March 10 is World Kidney Day, a global awareness campaign to emphasize the importance of the two bean-shaped organs located in the back of our abdomens. The 2016 theme stresses the importance of early diagnosis and treatment of children with renal disease, a topic of particular interest to the Alport syndrome community.
Alport Awareness Month begins in less than a week on March 1. March is also National Kidney Month, providing our community with plenty of reasons to increase awareness of Alport syndrome and the risks of chronic kidney disease. With your support, we can make this the single largest awareness campaign in the history of our organization!