In 1949, her first husband, Vint P. Lyman, died from a kidney disease called at the time Bright’s disease. Since it is a kidney disease, it is sometimes called nephritis, or hereditary nephritis. Now that more is known about the disease, it is referred to as Alport Syndrome.
Alport Syndrome is named after a British doctor, Cecil A. Alport, who in 1927 described three generations of a family with combinations of progressive hereditary nephritis and deafness.
Alport Syndrome has taken many members of southern Utah families, and they have had enough! To combat this disease, the Alport Syndrome Foundation (ASF) was formed in 2007.
The Foundation, a volunteer-led organization, is a 501(c)(3) non-profit corporation and is essentially a group of concerned families, friends and medical professionals that want to make a difference.
The Foundation has been built on the past efforts of the late Dr. Curtis Atkin of the University of Utah and the Hereditary Nephritis Foundation.
The Foundation has been successful in:
• Attracting the international interest of physicians and families from the United States, Europe, Australia, US who also have families affected by this disease;
• Providing families and physicians with the most current treatment methods;
• Centralizing information about Alport Syndrome;
• Providing communication and support to and between affected patients and families; and
• Identifying medical resources.
To battle this disease the Foundation is holding its first Annual Campaign for Healthy Kidneys. Forty-seven campaigners from Coast to Coast are raising funds over the next four weeks. The goal of the campaign is to raise $40,000 or more.
All funds will go directly to research. It is hoped that it will lead to successful long term funding from the National Institutes of Health (NIH) and other major granting institutions around the world.
This is where Maxine starts making an impact. “TEAM CEENEY”, named in honor of Maxine, is raising funds to help stop this menacing disease which has decimated so many wonderful members of our communities.
“TEAM CEENEY” is inviting any who would like to join this effort to help eliminate the devastating threat to donate to this campaign. Perhaps when this disease no longer pesters earthlings heavenly residents can get some “heavenly rest”.
Thank you for your help. Please send your donations to: Alport Syndrome Foundation, 1608 East Briarwood Terrace, Phoenix, AZ 85048 in honor of “TEAM CEENEY”
For additional information contact www.alportsyndrome.org.