Nancy Di Salvo
Born in Palermo Italy, Nancy’s family moved to the USA as legal immigrants when she was 4 years old and she grew up in New Castle, Pennsylvania. At age 13, her family moved back to Italy and a whole new life began. At age 20 she diagnosed with GBS – a slow and long recovery endured and she ended up in the hospital after 15 months with the diagnosis of GBS relapse. Eventually she was diagnosed with CIDP in 2006, 16 years after initial GBS diagnosis.
Nancy became a member of the early GBS Foundation in 1997 aspiring to build in Italy a small part of what Estelle Benson had created in the USA. In 2012 she became the Italian International Liaison for the GBS|CIDP Foundation attending her first Symposium in the fall of 2014. Since then she has attended all of the Symposia, traveled around the world to connecting with patients, caregivers and specialists …. “Everything that CIDP had taken away from me, CIDP had given back to me thanks to the Foundation.“ In May 2019 she was elected as an international member for the GBS|CIDP Foundation Board of Directors, an “emotional honor that can only inspire me more than ever.” From 2009-2021 she was a member of the first CIDP association in Italy becoming the representative for patients in southern Italy. The association became the voice of many patients as they obtained an official meeting with the Sicilian Government and local hospital administrations for the many difficulties encountered at that time in which IVIG was an off-label treatment for CIDP patients. Nancy is also a patient advocate within the Sicilian Rare Disease Network, a network created by small associations that all together built a strong group of dedicated patients and caregivers facing adversities and challenges with the certainty that together we can create new opportunities.
After being diagnosed in the hospital in November of 2011, Trevor set out on a quest to find local people who had also experienced GBS,who/ were ready to share their story. Along the way he found the GBS|CIDP Foundation International and, at the time, was also finalizing his own blog and story. He decided to contact the Foundation. Trevor, is from Malta, a tiny island in the Mediterranean nation of MALTA in Europe. It was not represented by the Foundation at the time, and he was introduced to the possibility of being a liaison for Malta. “I connected with the Europe Liaison for the Foundation, Patricia Blomkwist-Markens, and she encouraged me to volunteer for the Malta region. In terms of GBS, Malta has roughly 2-4 cases per year diagnosed and treated, but now those patients are not journeying alone.”Learn more about Trevor’s story and read his blog here. If you live near or in Malta, and would like to find local support, please fill out this form, and a representative from the Foundation will connect with you.
After originally being misdiagnosed as GBS in Nov 2006. During the initial stages of her journey she searched online for support and quickly came across the GBS|CIDP Foundation International website. “It was “literally a godsend. In 10 minutes it became clear to me I matched better CIDP than GBS. I sent an email and that ‘s how I came to know our beloved Patricia Blomkwist-Markens.” Alex was eventually diagnosed as CIDP in June of 2007. And since 2008 she liason on behalf of the Foundation to help out recently diagnosed patients, relatives and friends in Spain. In Nov 2019 she set up GBS|CIDP España- Polineuropatías Inmunomediadas, the local nonprofit she now presides, to better serve the GBS|CIDP family in Spain.