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


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

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 […]

cureCADASIL and the NJ Devils

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 […]

Pennsylvania CADASIL patient raises funds and awareness

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 […]

cureCADASIL spotlighted by Rare Disease Report

Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs. Recently the work done by cureCADASIL was spotlighted by RDR.  We are excited for this opportunity to […]

cureCADASIL Trustees attend Alzheimer’s Disease-Related Dementias Summit

On March 29-30, 2016, Trustees Ronnie Bradbury and Anne McGuinness attended the Alzheimer’s Disease-Related Dementias Summit at the NIH in Bethesda, MD. CADASIL causes vascular dementia. Trustee Ronnie Bradbury talked with Dr. Martin Dichgans, a CADASIL expert from Germany. Ronnie spoke to the medical professionals and other attendees at the conference, relaying a personal story about her […]

cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill

cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill

cureCADASIL Trustee and tireless volunteer Janice Ragazzo attended Rare Disease Week on Capitol Hill 2016 events hosted by RDLA in Washington, DC to spread awareness of CADASIL to our members of Congress. During this exciting week, rare disease community members from across the country learned about federal legislative issues, met other advocates, and shared their […]

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

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 […]

Article in Neurology Reviews on launch of the CADASIL Family Registry

Click here to read the article NEWS FROM NORD New CADASIL Family Registry is Launched Publish date: October 20, 2015 The cureCADASIL Family Registry has been established to support research and better understanding of CADASIL, an inherited disease causing progressive dementia due to multiple strokes and TIAs that is often misdiagnosed as MS or other […]

How can I support cureCADASIL Association’s Mission?

Looking for ideas on how to help raise money for cureCADASIL Association toward our goals and mission? Here are some suggestions. We welcome yours, so please share them with us by emailing us at: info@curecadasil.org Gifts: Looking for the perfect gift for someone on your list? Making a donation to cureCADASIL Association in honor of […]

The Stigma of Rare Disease: How Do You Tell People About Your Condition?

The Stigma of Rare Disease: How Do You Tell People About Your Condition?

by Janet Mills Posted on April 17, 2013 at: globalgenes.org/the-stigma-of-rare-disease-how-do-you-tell-people-about-your-condition Many rare diseases, like my own, have hard-to-pronounce names that evoke fear or boredom from people first hearing them. In my experience, eyes glaze over around the middle of “Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy.” Giving the acronym “CADASIL” for short doesn’t […]