History of HNF

The Alport Syndrome Foundation would not exist without the efforts of the Hereditary Nephritis Foundation (HNF) and the research pioneered at the University of Utah by Dr. Curtis Atkin (who himself had Alport Syndrome). We believe it is important to recognize those who have contributed in a remarkable way to the scientific advancement of understanding this disease and therefore have chosen to provide a brief historical narrative of the HNF.

In 1977 several individuals affected by Alport Syndrome (AS) came to together to discuss what could be done about the disease. They were in agreement that an organization needed to be put in place that could provide information to those who suffer from AS and that could provide incentives and possibly assistance to help study and find a cure for AS. This organization was formalized in 1978 as the Hereditary Nephritis Foundation, or HNF.

HNF was instrumental in getting the word out to AS families about what AS was, what was being done professionally to treat it, and what they could do to help. HNF assisted in projects and research that identified AS genes, gathered clinical and genetic data on over 500 different AS families, and helped develop genetic testing for AS.

HNF was also instrumental in educating both the medical world and patients about exactly what AS is, and what it is not. Cleaning up the clinical definition of AS was a major effort in the beginning of HNF. A semi-annual newsletter was produced. In 1996, Dr. Curtis Atkin, established an Alport Study website that, to this day, continues to provide valuable information to many.

Through its 25 year history HNF met its biggest challenge in recruiting new members. Prior to the Internet, spreading the word was slow and costly. Two large AS families provided much of the initial support, and the membership expanded rapidly, but HNF leadership had difficulty expanding beyond that initial group.

Dr. Atkin immediately saw the potential of this new technology to spread information about AS and to recruit new members. As noted, Dr. Atkin not only established the Alport Study website, but also a website for HNF. In 1998, he also established, using new-at-that-time technology, an Internet chat group called the Alport Forum. Until his death he acted as the moderator of the Alport Forum. His answers to all sorts of queries provided comfort, hope, and information to many of the Forum participants.

In January 2000, Dr. Atkin passed away. His death left Kay Johnson who for the majority of HNF’s history had served as the President, with much of the responsibility of carrying forward the work of HNF. Throughout the history of HNF, Kay had sent out numerous pleas for new volunteers and they were never more needed than after Dr. Atkin’s death. After trying to find someone who would take over for two more years, the legal paperwork for HNF and their non-profit status lapsed. For all intents and purposes HNF ceased to exist.

However, Dr. Atkin’s websites continued to inform many about Alport Syndrome. The HNF website continued to refer many to Kay. One of those was Vint DeGraw in late 2004. Vint had Alport Syndrome himself and had recently had his 2nd kidney transplant. He expressed an interest in recruiting new members and restarting HNF. In early 2005 he met with Kay, Dr. Joyce Denison, and Dr. Martin Gregory both of the University of Utah Alport Study to see what was needed to start things up again.

Vint posted his intent on the Alport Forum hoping to attract other volunteers. There were some that responded and some plans were laid. However, for a year nothing much happened. Then in September 2006, Sharon Lagas and Margaret Blue saw the request for volunteers on the Alport Forum and they responded. Sharon’s two sons have Alport Syndrome. One email led to many more, and many phone calls later the Alport Syndrome Foundation (ASF) was formed.

Though ASF is taking a more specific focus that HNF, it would improper not to recognize the pioneering work that was completed by HNF, Kay Johnson, and Dr. Curtis Atkin. We are honored to have the opportunity to build on their past efforts and press forward towards a cure.