e-Newsletters and e-News
Feel free to print the information for your doctors, Please advise us if you have changed your e-mail address. Please make sure you have signed the registry, which includes your e-mail address so you can receive newsletters and e-News. †All newsletters and
e-News are e-mailed unless you notify us you don't have electronic access and prefer copies be mailed.
Rare Disease Day 2015, Educate the Medical Community Capaign 2014
and Research information.
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. Dr. Debertrand, explained 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 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.
January 2014 - CADASIL e-Newsletter
CADASIL App, Study in Germany, Medical, Updates, Disability Project Study, CADASIL 20 Years Later, CADASIL France, Caregivers, Rare Disease Day 2014, Neuro Film Festival, CADASIL Data, UK CADASIL Clinic, Raise Awareness, What is Dementia, Fund-raisers, Brain Initiative and much more.
September 2013 - CADASIL Disability Project
August 2013 - CADASIL Disability Project
Disabilities With CADASIL Project (Questionnaire/Survey) Orphanet, The European Portal And Worldwide Reference Database Of Rare Diseases And Orphan Drugs, In Collaboration With CADASIL Together We Have Hope Non-Profit Organization, Invites CADASIL Patients And/Or Their Families To Participate In This Ground Breaking Project.
June 2013 - CADASIL Summer Events
Boston Conference and 3rd Annual CADASIL Research Fund raiser
March 2013¬† e-News
CTWHH Recognized by NORD for Rare Disease Day, Video Addresses Budget Cut for Rare Disease, President Obama Recognizes Rare Disease Day, Rare Disease Day 2013 Rally, Austin, Texas, New Questions Answered by the Medical Professionals.
January 2013 e-Newsletter
International Scientific Advisory Committee, New Mission Statement, Research Updates, Rare Disease Day , Advocacy & Accomplishments
October 2012 - e-News
August 2012 - e-News
Conference , Q & A , CADASIL Map, and much More ¬†
Presentations and Contributions, Genetic Research, Clinical Research
September 2012 Updates
Results of the CADASIL Diet Study, Study presented at the Lisbon Stroke Meeting
April 2012 e-News
Important Information On CADASIL Emergency Card
Rare Disease Day Press Release
February 25, 2012 Rare Disease Day Update
February 16, 2012 Update
December 2011 Newsletter
Rare Disease Day, Collaboration, Jack Shields, Emergency Plan, Campaign MD Students
Awareness Wristbands, NYU Study Closed, Inserm Mouse Model, Michigan Update, AHA Funding Grants and Help Others and Forum.
Family Health History Month, Assist Researchers and the Medical Professionals, Volunteer, Awareness Campaign of educating medical school
Students, need to avoid
Dedication to UK CADASIL Trust and Jack Shields
Marie-Germaine Bousser, the history behind CADASIL
Research Links, CADASIL Study, Fund-raiser Update
Pronouncing CADASIL, Registry, Study Results, CADASIL France, wristbands, Updated educational materials, share your experiences.
Doctors Locator, Wristbands, New Videos, Family Forum and Podcasts
Studies, Forums, Face book,Twitter, Nondiscrimination, Brochures, MS Campaign, Research Updates, Conference Presenters, Symposium Summary, Conference Comments, Questions about DVD,Registry Data, In Loving Memory and ¬†Brian Fitness Exercises,
March 2010 Newsletter
Family Conference In USA, State Vocational Rehabilitation Agencies, Locating A Doctor, Visitors To The Website, NYU Study, Our Registry, Research Cervco & Michigan, Confirmed Cases, Anniversary Thanks, 10 Simple Tricks To Exercise Your Brain.
April 2009 Newsletter
New York Research, Raise Funds For CADASIL At No Cost To You, Looking for a Doctor, Our Registry Data, Genetic Non-Discrimination Act, The Nonprofit Is Currently, Donation to NYU, Have Fun Improving Your Memory, Health Care Provider, Difference Between A Stroke &TIA and Emergency Plan
May 2008 Newsletter
Donepezil/Aricept CADASIL Study Report, Battle Social Security, CADASIL Trial, Medical News,Genetic Anti-Discrimination Act, Our Registry,Q & A From Our Scientific Advisory, Free Fund-raising, Research around The World, NY Museum Scavenger Hunt, Neurological Tests, Caregivers, Tips to Make Life Easier and Mind Games
Our Registry, Cases Reported Worldwide, If Your Health Insurance Does Not Cover, Visits To Your Neurologist, Blue Cross/Blue Shield Recognizes CADASIL In Arkansas, "Cycle For CADASIL" - Patients Rides 200 Miles, Fund-raising No Cost To You, Tips For A Good Night's Sleep,¬† Our Registry, Cases Reported Worldwide, If You're Health Insurance Does Not Cover Visits To Your Neurologist
January 2007 Newsletters
Blue Cross/Blue Shield Recognizes CADASIL In Arkansas, New Tool - Online Discussion Group, "Cycle For CADASIL" - Patients Rides 200 Miles, Should I Get Tested, Fund-raising No Cost To You, Status Of Genetic Non-Discrimination Act, Stem Cell Research Act Of 2005, Letter Writing Campaign "Raise Awareness" Part 2, CADASIL Guest book Changes Its Name, Family Experiences, Is Laughter The Best Medicine and Brain Power - The Human Brain.
July¬† 2006 Newsletter
Scientific Advisory Committee Established,, Emergency Care Plan, Meet Our Advisory Members, Our First Anniversary , Volunteer Opportunities, Letter Writing Campaign "Raise Awareness" Part 1, Physicians Locator On Our Website, Increase Awareness With The American Stroke Association, Definition Of CADASIL , New Online Awareness, Fund-raising Page, Donepezil/Aricept Ends, Update On Genetic Non-Discrimination Act Of 2005, Shop For Charity, Data Registry Report, CADASIL Tissue Bank, CADASIL Rare, Often Misdiagnosed, Petrochemical Imbalances In CADASIL, ¬†Family Experiences, Harvard Medical School To Teach Nan course, Inadequate Family History - Barrier To Diagnosis
We Are A Nonprofit By The IRS, Hurricane Katrina Support, NORD Conference, CADASIL Study Continues, New Domain Name ‚Äď CADASILfoundation.org, Establishing A Scientific Advisory Board, ULF Conference Report, Fact Sheet, CADASIL Meeting, Emergency Care Plan, Should I Get Tested, Volunteer Page, Raising Awareness, Magazine Article On CADASIL, Health care Providers Web page, Testing Sites, Our Goals Organization Recognized By NORD, Genetic Alliance And Chid Online.
June 2005 Unofficial Newsletter
New Study for CADASIL Patients, Testing for CADASIL Diagnosis and Prenatal, Nitro Oxide.
February 2005 Unofficial Newsletter
New Chapter In CADASIL, Awareness Conference/Symposium in England, CADASIL UK Trust, Jack Shields,Study for Short Term Memory Lost
June 2002 Unofficial Newsletter
How Did The Newsletter Begin, How To File Social Security, ¬†CADASIL France, Going Public and Medical Discussion, With French Research
September 2000 Unofficial Newsletter
How Did This Newsletter Begin, ULF,¬† Promising News, Family Stories,There Is Hope
May 1998 Unofficial Newsletter
ULF , Logo, My Story, Maps Of Confirmed Cases Around The World,¬† Cases, CADASIL Together We Have Hope, How Did The Newsletters Start
February 1998 The First Unofficial Newsletter
How Did It Begin?, Test for CADASIL, Research, How does my family cope? Others like us, Response to the WEB