ALPORT SYNDROME CAMPAIGNERS - STAN & LINDA SILVER This campaigner highlights Stan & Lindas involvement with the ASF Annual Campaign. Stan is the ASF Treasurer and has a very active role in trying to secure outside funding for events weve held in the past such as the Family Conference of 2012 and the International Conference in 2010. He may have lost his son, but through his involvement in creating and supporting ASF, he has found hope. Read for yourself! The photos that I will attach are of Stan and Paul at Paul’s wedding in 1996 and a current photo of us with 6 of our 9 grandchildren. Four of the children in the photo have Alport Syndrome. Stan lost his son Paul to Alport Syndrome 10 years ago. It is only since Paul’s loss that we were able to put a name to this terrible affliction. We were unaware that this rare, inherited disease that causes kidney failure and can affect vision and cause hearing loss had been in our family for 3 generations. We decided to take action and with Sharon have been involved with the Alport Syndrome Foundation since its inception. We strongly support the Foundation by working with the international community to raise awareness in both the medical and patient communities and have been involved with meetings in Australia, China and France, in addition to medical symposia and patient meetings in the US. The strong ties that we have established in the medical and research communities give us hope that ongoing research will find better treatments and ultimately, a cure. The funds raised through the Annual Campaign all go to expanding this reach. Let’s give our grandchildren and everyone affected by this disease a brighter and healthier future!
Posted on: Tue, 07 Oct 2014 01:30:28 +0000
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