News/Events

I am writing this for my late husband. Mark's journey started in 2015. He retired in 2015 to enjoy his passion for fishing and hunting yet that never happened due...

The 2021 Million Dollar Bike Ride (MDBR) held by the Penn Medicine Orphan Disease Center raised funds for 28 different rare diseases. The program provides one-year grants to support research...

The 2021 MDBR remained virtual due to COVID-19 concerns, but that did not stop Team CADASIL from putting the pedal to the metal for CADASIL research.  Our team of virtual...

I was 13 years old when I had my first TIA.  I lost feeling in my left hand, left side of my tongue, sight and could not speak properly. I...

The NIH has released a one month survey in order to enroll people with rare conditions and look at whether their condition predisposes to more or less severe symptoms during...

2020 was unlike anything we have experienced in the past. The COVID-19 virus changed so many things in our country, including changing the Million Dollar Bike Ride for rare disease...

A brief chat with Jane Gunther. Patient advocate associate for Rare Genomics, Lauren Fang, met up with cureCADASIL Trustee and now President, Jane Gunther, at the 2019 Global Genes Summit. Read...

This patient story is adapted from the foreword of our new book of poems (Scud Clouds by David Keller and Eloise Bruce) about our journey since David was diagnosed with CADASIL.  It...

On June 8, 2019 a team of rare disease warriors gathered as Team CADASIL to ride our first Million Dollar Bike Ride (MDBR)!  It was an early morning as my...

There is an ongoing research study at University of California San Francisco (Mission Bay) for both clinically tested positive CADASIL patients AND undiagnosed family members, (siblings, parents, children, grandchildren, etc).We...