Soaring Above the Stoarm 5k Run and 1 mile walk for CADASIL 2016

Category Archives:CADASIL Awareness Events

Soaring Above the Stoarm 5k Run and 1 mile walk for CADASIL 2016

On May 7, the 2nd Annual Soaring Above the Storm 5K Run & 1 Mile Walk took place in Piscataway, NJ. Runners and walkers showed up regardless of the wet and cold weather! Thank you to all sponsors, participants and donors, in-person and virtual, who supported the event this year! Special thanks you to Linz Culcasi and Kathy Montgomery for your time and efforts organizing this fundraiser!

There was a CADASIL patient photo board created for the first 5K event in 2015.  It was displayed again for the 2016 event.  An additional photo board was displayed this year with new photo submissions. The photos show CADASIL patients from all around the world.

Member and patient Vanessa Prontnicki was the spokesperson for the 2016 event. She is shown to the left with her husband Jeff. Her uncle Bill Hall wrote on her Facebook post after the event: “Vanessa….

Runners and walkers who could not attend the event in New Jersey joined and participated in their local areas as “virtual” events.

Above left: Bruce and Henna participating from the Pacific Coast in California

Above right: Robin Russell Wilson participating in Salt Lake City, Utah

cureCADASIL and the NJ Devils

On February 16, 2016, cureCADASIL was the Community Assist organization during the New Jersey Devils vs. Philadelphia Flyers Hockey Game. This was our second year to participate in this event that brings awareness and donated funds to CADASIL. cureCADASIL Trustees Janice Ragazzo and Anne McGuinness did a great job and had fun raising awareness for CADASIL at the game!

Pennsylvania CADASIL patient raises funds and awareness

On February 7th, 2016 CADASIL patient Vanessa Prontnicki was honored at a “Dine & Donate” fundraiser organized by parents from the school where she teaches. Over $1200 in proceeds raised at MaGerk’s Pub in Fort Washington, PA that night were donated to cureCADASIL. About 200 people came out for the event, and it was televised in the local area. MaGerk’s also donated 15% of their receipts.
You can see the video clip of Vanessa’s event and interview here:
Local news interview with Vanessa
A huge thank you to Vanessa and her supporters for making a difference in the fight against CADASIL!

CADASIL Photo Frames Abound on Social Media for Rare Disease Day 2016

In honor of Rare Disease Day in February, many patients in the global CADASIL community shared their photos on social medial for awareness. Some of these photos were featured in cureCADASIL Fact Friday FaceBook posts online.  This was a fun and effective way to connect the community and inform others about CADASIL. Thanks to everyone who participated and to Janet Mills for organizing!

This article was originally featured in  a 2016 issue of EMBRACE newsletter published by cureCADASIL – thank you to everyone who contributed and to Janet Mills for assisting with pictures!