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.
Many patients with Alport Syndrome will face decisions about life-sustaining treatment and the more we know about those treatment options, the better we will be able to determine the best choice for ourselves and our family.
April is Donate Life Month, a chance to raise awareness of the importance of organ donation and the benefits of organ transplants. Because there is currently no treatment to prevent the development of kidney failure in people with Alport Syndrome, this is a topic of great significance within our community.
Because Alport Syndrome nearly always leads to kidney failure and often has other serious symptoms, such as severe hearing loss, receiving a diagnosis is often difficult. Meet two people who turned their diagnosis into an opportunity to help others cope with the challenges of living with 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!
Rare Disease Day, now celebrating its ninth consecutive year, occurs annually on the last day of February. On February 29, the rarest day of 2016, join ASF and countless others worldwide in raising awareness for the challenges faced by those living with these often-overlooked diseases.
For most Alport Syndrome patients and families, a discussion of the genes that carry this disease are the starting place for understanding the way the disease is inherited. However, just a few short decades ago, how the disease was inherited was unknown to the medical and patient communities.