CADASIL TOGETHER WE HAVE HOPE NON-PROFIT ORGANIZATION - CADASIL A RARE GENETIC DISEASE
 CADASIL Together We Have Hope Non-Profit Organization
CADASIL e-News
February 2015
Visits to the website

Year 2014 - 67,403 visitors
Year 2013 - 48,605 visitors
Year 2012 - 34,022 visitors
Year 2011 - 33,288 visitors
Year 2010 - 20,396 visitors


Reported by Urchin

On May 10th, 2005 we became a non-profit organization promoting advocacy, awareness, education, research and support for this rare genetic disease

  

We are committed to continuing in enhancing the communication network among families as well as identifying sources of medical care and social services. We foster advocacy and open communication among all stakeholders as we work collaboratively to find a treatment or cure,

July 1997
The CADASIL Together We Have Hope website was created 17 years ago.
In the news - 

Living in the shadow of hereditary disease

Raising Awareness for CADASIL Radio Talk 

Bottom line in hunt for stroke cure as scientists study cells from patients' buttocks
Athena Alliance Program

Athena Diagnostics has recently announced a new
program to make diagnostic testing more accessible 
and more affordable. On September  1, 2014, the 
company launched the Athena Alliance Program to
expand patient access to a variety  of diagnostic 
methodologies and tests, especially those for 
Social Media
2014 Educate the Medical Community Campaign 

Over 3,400.00  CADASIL Brochures were mailed to the medical community.    


Mobile website.
Rare Disease Day 2015

 

February 28, 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from more than 80 countries and regions worldwide are planning awareness raising activities around the slogan Day-by-day, hand-in-hand.  
 Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. 

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases. 
 

7 Ways You Can Participate in Rare Disease Day 2015      http://www.rarediseaseday.org/article/get-involved

Texas Rare Disease Day

 

This is the fourth year we will promote CADASIL on this special day, February 28, 2015. If you live in Texas join the Rare Disease Community as we rally at the South Steps of the Capitol hearing many people, their families and organizations speak of rare diseases. Also speaking are many Texas Legislatures, dignitaries, and celebrities showing support and awareness for rare disease, The University of Texas at Austin Spirit Squad, Cheerleaders and Hook'em mascot will also be attending, Follow the event on Facebook at: 
 https://www.facebook.com/RareDiseaseDayTexas2015
CADASIL Research

 

In 2010, the very first USA CADASIL family conference and scientific symposium were presented with a collaboration from CADASIL Together We Have Hope Non-Profit and United Leukodystrophy Foundation.  During the family conference it was announced that both organizations would be working together for CADASIL and established an account exclusively for CADASIL research.   
January 2014, after 4 years, the researchers were notified about the $ 25,000.00 grant opportunity.  June 10, 2014 it was announced a $25,000.00 CADASIL Research Grant was awarded to Fabrice Dabertrand, Ph.D. of the University of Vermont College of Medicine. Congratulation to Dr. Dabertrand.  Dr. Dabertrand, explains what they will be using the grant for: The active regions of the brain trigger rapid and local elevations of blood flow ensure an adequate supply of nutrients and oxygen. This process is known as neurovascular coupling requires a precise communication from astrocytes to arterioles. Using a CADASIL mouse model developed by our collaborator Dr. Anne Joutel, we will test whether the presence of a CADASIL-causing mutation in the NOTCH3 gene alters the communication between astrocytes and arterioles during neurovascular coupling.  We wish to thank everyone who has donated funds and thank the ULF for their dedication and commitment to CADASIL.

Research Links   

 

Cysteine-Sparing CADASIL Mutations        

New mutations in the Notch3 gene
 Cortical Neuronal Apoptosis in CADASIL 

 www.cadasilfoundation.org 

 

Please take your time to browse through the website.  We have compiled a wealth of information and resources through our carefully nurtured relationships and collaboration with a plethora of medical professionals, researchers, and organizations throughout the world.  Feel free to download any of the information from the website and forward it on to family members, friends, and especially medical professionals.   

Keep checking the website and your e-mail as we will keep you up to date information on available studies to participate in, research news, e-mail alerts, and newsletters.