Rare Disease Report

Alport Syndrome Foundation Providing Awards for Patients

OCTOBER 03, 2016
Alport Syndrome Foundation
Alport Syndrome patients are encouraged to apply for the Paul Silver Tribute Award before the November 4, 2016, deadline. The award is aimed at enriching the lives of young Alport patients ages 16 to 22 to support education, complete a project, or pursue an activity that will enhance the applicant’s life. Awards will be granted up to a maximum of $1,000.
Alport Syndrome is a hereditary kidney disease that causes a decline in kidney function, hearing loss, and vision problems. The disease leads to kidney failure for most boys by the time they reach their 20s. Girls are affected too, with some impacted similarly to boys but most seeing later disease progression. It is estimated that there are 30,000 to 60,000 Alport Syndrome patients in the USA, but the disease is still often misdiagnosed or undiagnosed. There is currently no treatment that has been proven to prevent the development of kidney failure in people with Alport Syndrome; however, early diagnosis is essential as there are medications to delay the progression of the disease. There is no cure for Alport Syndrome.
The Paul Silver Tribute Award was created in memory of Paul Silver, an Alport Syndrome patient. Paul was a film and music editor in Hollywood who passed away in 2004 at the age of 38. In 1985, Paul was the recipient of a similar award while studying filmmaking in college. Paul needed a camera to document his trip to Tuscany, Italy, where he was planning to attend a summer study program. He applied for, and won, an award that enabled him to make a documentary film about his experiences in Italy and the benefits of this program for the University. The purpose of the Paul Silver Tribute Award is to help other Alport Syndrome patients achieve one of their goals.
“We are in our fifth year of accepting applications for this award,” said Alport Syndrome Foundation Board President Sharon Lagas. “Eleven young people with Alport Syndrome have already received this award and their stories are inspirational, full of courage and provide positive role models for other young people affected by this disease.” Essays from previous award winners are available on the website.
The award can be used for a variety of activities, including tuition, summer camp, music lessons, an educational trip or a specific project. Applicants will be evaluated on the purpose and potential impact of the award, quality of their essay, recommendations, and completeness of their submittal. The application guidelines and requirements are available on the Foundation’s website.
The Alport Syndrome Foundation (ASF) is the leading independent non-profit organization in the United States serving and giving a voice to the Alport Syndrome community. ASF’s mission is to improve the lives of patients through education, empowerment, advocacy and research to realize the vision of conquering Alport Syndrome.
For more information on the Foundation and Alport Syndrome, or to obtain a copy of the award application, please visit www.alportsyndrome.org.                

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