Affiliations Public Disclosures
Advocacy International Scientific Medical Advisory
Board of Directors Using the Name and Logo
History Values
Mission Vision
Privacy Policy


Brief History
Until CADASIL Together We Have Hope was established  there was nowhere to turn for assistance and support.  A  website was created in 1995 by Billie Duncan-Smith after her husband’s, Steve’s diagnosis, the primary aims of the website was to ensure that there was an increased awareness and knowledge of this disease.

The demand for information became so great that on May 10th, 2005 CADASIL Together We Have Hope became a 501(c)(3) non-profit organization, recognized by the IRS as eligible to receive tax deductible donations. 

CADASIL Together We Have Hope is devoted to promoting advocacy, awareness, education, research and support. We are dedicated to enhancing the established 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 collaborative to find a treatment or cure for CADASIL.


It is our vision that an environment where affordable diagnosis and up-to-date care is readily available with cost effective treatment for everyone.


Families, Advocacy, Medical Technology,Innovations, Loyalty, Integrity, Ethical Practices, and Service to Society, which spells out FAMILIES.  

To improve the lives of all we work collaborativelywith various organizations, physicians, researchers, and groups to ensure the channels of communication are kept open among all  to find a treatment or cure for all. We work closely with a myriad of worldwide researchers push and announce current studies of interest to our CADASIL community. 

International Scientific Medical Advisory Committee 

This committee is comprised of CADASIL Specialists from America, Canada, France, and the United Kingdom. The group provides on-going information and support to the organization, which in turn is shared with the CADASIL community via this website, newsletters, and conferences.  The non-profit extends an enormous thank you Dr. Hugues Chabriat, Dr. James Grotta, Dr. Raj Kalaria, Dr. Keith Muir, Dr. Leonardo Pantoni, Dr. Stephen Salloway, Dr. Viera Saly, Dr. Swathi Sathe, Dr. Anad Viswanathan, and Dr. Michael Wang for volunteering their time towards the organization's mission.   Continue to read about our Scientific Medical Advisory Committee.

International Board of Directors

The board are all volunteers who dedicated to finding a treatment or cure for the genetic disease.
Continue to read more about our board.

Public Disclosures

We are recognized as a 501(c)(3) non-profit organization. Our EIN/ Federal Tax ID # is 20-2838602. We’ve been on GuideStar since 2006!  GuideStar is a public charity located in Williamsburg, Virginia.  Founded in 1994, GuideStar provides a database of comprehensive information on over 1,000,000 501(c)(3) U.S. non-profit organizations recognized by the IRS as eligible to receive tax-deductible contributions.  View our public disclosures

Privacy Policy

Thank you in advance for reading this policy.  This is our promise to you: Our board always acts in accordance with the nonprofit’s mission, vision, and values.  The Board  Directors at CADASIL Together We Have Hope care about all stakeholders in the CADASIL community and strive to make decisions based on good balanced information. We respect individual privacy and values the confidentiality of its visitors, partners, and donors. Continued 

Using the Name/Logos    

We understand you wish to raise awareness and education. Please remember, prior authorization is required if you want to use the organization's name or logo on any materials you are creating or distributing.

This policy is in effect so that any materials can be approved by the Medical and Scientific Advisory Committee for accuracy. Thank you in advance for your kind understanding.