Aug 27,2017
1 Comment on cureCADASIL Auction Fundraiser Starts September 1, 2017
CADASIL Fundraisers
The cureCADASIL Association online auction will be held September 1-7, 2017. Bidding on items will help cureCADASIL Association support programs to increase awareness, education and research for CADASIL. Proceeds from this auction event will go to cureCADASIL Association programs which are in great need of funding, including our physician outreach, research alliance, and webinar series. […]
The following link will take you to the recorded August 2017 CADASIL Connection webinar. You will be asked to enter your name and email to access this recording. The sound quality is low for the first several minutes due to the volume of callers entering the webinar. The sound quality is excellent for the rest […]
Rare Disease Report shared the news of the latest published CADASIL research from the lab of Dr. Joe Arboleda Velasquez! In the article they also highlighted the work being done by cureCADASIL Association. We are thankful for RDR’s support of rare diseases and their assistance in raising awareness of CADASIL. Rare Disease Report on CADASIL […]
Exciting progress is being made in understanding mechanisms of CADASIL mutations in disease expression, leading to identification of potential disease-modifying therapeutics and disease biomarkers. To highlight these advancements cureCADASIL Association is hosting CADASIL Connection an online series of three informative webinars that will be unique opportunities to educate and connect the audience of researchers, clinicians, and patients on […]
This is an edited version of a post Robert shared on FaceBook and used with his permission. Thank you Robert for sharing your story, it will help many people also on a journey with CADASIL. I’m 50 years of age now and when I was 38, my wife was pregnant with our daughter […]
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 […]
Feb.27 – March 2, 2017 Over 600 Rare Disease patients, caregivers, researchers and advocates met in Washington during the course of the week. 350 advocates attended the Legislative Conference that was held on Tuesday, Feburary 28th. Through out the day experts from Capitol Hill and the patient advocacy organizations discussed what to expect from the […]
Tami Morris Kansas, USA Age 44 at diagnosis Editor’s Note: Tami was confirmed for having the CADASIL mutation in early September 2017, and shared her story a short time later. Thank you, Tami, for your willingness to talk about this so soon. (This piece is edited from her posts in CADASIL Support Group on Facebook.) […]
cureCADASIL Associate Trustee Sandra Talbird joined the newly formed NC Rare Disease Coalition last Fall. The Coalition is made up of rare disease patient advocates representing a variety of rare diseases, with CADASIL being the only adult-onset disease currently represented. The Coalition’s mission is to advance the interests of the State’s rare disease community by advising the […]
In May 2016, Tony and Janice Ragazzo helped organize a fundraiser at ESM Ferolie in New York, where Tony has worked for many years. The employees really pulled together and raised $550. The Ferolie Family generously matched what was raised, bringing the total donation for cureCADASIL to $1100. We are so very thankful to the efforts of […]
