Rare on the Road 2017 Attended by cureCADASIL Trustee


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Rare on the Road 2017 Attended by cureCADASIL Trustee

Nancy Maurer, cureCADASIL President and Trustee, attended RARE on the Road in Kansas City on June 5, 2017. This event, sponsored by EveryLife Foundation and Global Genes, focused on topics from Capacity Building to the Patients’ Role in Drug Development, including breakout sessions and hands-on workshops. Attending this event enabled cureCADASIL to engage with other rare advocates and benefit from connecting with other disease advocacy leaders. Meeting and collaborating with leaders of other Rare Disease organizations was both encouraging and inspiring. The leadership teams of Global Genes and EveryLife Foundation brought such a refreshing perspective. Their energy and dedication to the Rare Disease cause is amazing and knowledge of the resources available so helpful. There was so much value in hearing speakers like Scott Hawley, a Stowers Institute Investigator and American Cancer Society Research Professor, talk about the importance of funding fundamental research for rare diseases and Lisa Schill discuss in detail how patient advocates can work with Congress to make a difference. The rare disease community is filled with wonderful leaders interested in collaborating to assist others on the journey with rare disease.

RARE on the Road succeeded in helping cureCADASIL leadership learn, grow and develop even more as activists for the CADASIL rare disease community!

2012 CADASIL Forum Conference, Utah

CADASIL Forum

Five members of the Board of Trustees for CADASIL Association attended the CADASIL Forum Conference in Salt Lake City, Utah on September 12-14, 2012.  This conference of medical professionals was organized and sponsored by the Russell family.

While the CADASIL Association Board meets via conference call once a month, this was our first opportunity to get together in person since the association was formed in the spring. Trustees Frederica “Freddie” Schilling, Christi Lushbaugh, Barbara Hunt, Janet Mills, and Anne McGuinness shared information regarding the CADASIL Association and held the first official membership meeting the day after the conference.

Many thanks to the Russell family for a successful conference where many CADASIL patients and families could meet up and gain more knowledge about this genetic condition.

This article was initially featured in the December 2012 issue of EMBRACE newsletter published by the CADASIL Association.