CADASIL TOGETHER WE HAVE HOPE NON-PROFIT ORGANIZATION CADASIL A RARE GENETIC DISEASE 
e-Newsletter
January 2014
CADASIL APP FREE ON  
ITUNE AND GOOGLE PLAY
This is the first mobile app for CADASIL.  Have all the information about CADASIL on your smart phone.  You take it with you everywhere you go. 
The app is to educate your family, friends and the medical community. It has the emergency plan which includes very important information if you go to the E.R.  Professor M. Nelson stated, " It is an important mechanism to communicate to the world."  Dr. Michael Wang said, "  I am impressed with the app.  I think it is great that patients can have quick access to information on their phones. This is the way of the future. I liked the organization and the content.  The emergency plan is good."
CADASIL STUDY - GERMANY  

Dr. med. Marco D�ring, Junior Research Group Leader, Institute for Stroke and Dementia Research (ISD), Klinikum der Universit�t M�nchen, Max-Lebsche-Platz 30, D-81377 M�nchen: A new study is currently set up in Germany at the Institute for Stroke and Dementia Research in Munich (http://isd-muc.de). The study focuses on the identification of relevant mechanisms of the disease in order to develop new therapeutic strategies. The study is scheduled to start in February. A study visit includes MRI exams as well as psychological testing. No contrast agent or other drugs will be administered. The researchers are seeking native German speaking participants for this study. Travel and accommodation costs will be covered. For more information, please contact 089-7095-8363 or
cadasil@med.uni-muenchen.de

MEDICAL UPDATES  FROM A FEW OF OUR MANY AFFILIATED EXPERTS        





 
COLOR BROCHURES AND THE APP NOW  
HAVE CONTACT INFORMATION
  • Partners Telestroke Center, Boston, Massachusetts,   
  • University of Michigan Health System, Ann Arbor, Michigan
  • University of Utah Health Care,  Salt Lake City, Utah
  • Centre de r�f�rence des maladies vasculaires rares, Paris, France

Thank you to the above universities and hospitals. 

FIND A PHYSICIAN WHO KNOWS ABOUT CADASIL

 
We have a physician locator on the website.
   Over 390 physicians  from around the world who have seen at least seen one patient or more with CADASIL.

 


Canada
United Kingdom
Australia/New Zealand
Other Countries

Thank you to our volunteer who is working on the
Physicians Locator.
CADASIL DISABILITY/STUDY  

149 patients participated in a CADASIL Study - We were honored to be asked to collaborate with Orphanet, the European portal and worldwide reference database for rare disease and orphan drugs with the first-ever CADASIL Disabilities Study.  July 2013 to September 2013.  This important data will allow healthcare professionals, patients and their families, care and support facilities to learn about the impact of CADASIL on the patient's daily life worldwide.   The data will enable Orphanet to enhance their open-access European portal for information on rare diseases and orphan drugs; which is visited by 20,000 people per day.  Thank you to CNSA for funding this study. 
NON-PROFIT ADVOCACY UPDATES
  • Board Members attended a webinar series on Rare Disease Registries.  Entitled, "Gain a clear understanding of design, implementation, and resource considerations that are the foundations of a successful registry." 
  • Member attended American Heart and Stroke who   Webinar concerning Translational; Vascular Cognitive Impairment.  Vascular dementia is a leading cause of cognitive decline with many commonalities of risk factors and treatments with ischemic stroke.  The word CADASIL was mentioned several times during the presentation.      
    Find out more . . . 

  SEPTEMBER 2013 - SECOND INTERNATIONAL CADASIL WORKSHOP: 20 YEARS LATER, WHAT NEXT?'   

 
To celebrate the 20th anniversary of CADASIL, a workshop was held September 19-20 2013 in Paris, France at the Fondation
Singer Polignac in Paris.  Specialists of CADASIL, and other small artery diseases of the brain, of Notch 3, and of neurovascular coupling from around the world participated in an intense scientific workshop to review the past twenty years and discuss the future of CADASIL research. 
During opening remarks, Professor Bousser honored and recognized the members of the CADASIL French Association (President Jean-Luc Airiau and Secretary Chantal Neau) for attending the scientific workshop as well CADASIL Together We Have Hope (Billie Duncan-Smith, Board Director & President).  Their symbolic presence was meaningful as both organizations were there in CADASIL's infancy.   

The CADASIL French Association and CADASIL Together We Have Hope sincerely appreciate the efforts of all medical professionals worldwide who are working to find a treatment or cure for CADASIL.  A special thank you is extended to those who presented sessions or moderated discussions at this spectacular workshop.

 

CADASIL FRANCE ASSOCIATION  
OUR SISTER SITE 
  
A nonprofit was established for CADASIL in France in 1999 governed by the law of 1901, under the original name of France ACF (Brain Art�riolopathies Family).  The association brought together patients, their families, people who wish to support the cause and can be the main contact between patients, the medical community, scientific research and administration. In 2003, the nonprofit changed its name to  the CADASIL France Association. 

 

There is a strong bond and collaboration with France Association and CADASIL Together We Have Hope are working  on the same goals;  to promote awareness of the disease, better inform patients, their families and the medical professionals,   encourage and support medical research so that one day there will be a treatment to reduce or eliminate the symptoms of CADASIL.   
September 2013, Board Member, Billie Duncan-Smith was invited to the board meeting and shared coffee with the CADASIL France Association board, before their meeting at Lariboisi�re hospital in Paris, France.    
 
In the August/September 2013 Neurology Now magazine for patients and caregivers mentioned   CADASIL  in a feature article: Stroke Navigating the Complexities of Stroke What are the risk factors for a stroke?Family history: Stroke risk is greater if a parent, grandparent, sister, or brother has suffered a stroke. Rarely, strokes may be symptoms of genetic diseases such as cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy.  This is a free, official bi-monthly publication you can order it.    
CADASIL CAREGIVERS 

Since CADASIL has so many different symptoms, it is impossible to find a caregivers group for CADASIL. Caregivers are encouraged to look in your community for support groups for the symptoms your love one is having. A caregiver has been attending an Alzeimhers, Dementia support group and she has reported this has assisted her many ways for coping  and understanding about dementia, ways to respond to her loved one and excellent resources in her area. Look in your area for a support group which could assist you.  Click here to go to the website to find out more..

WHAT IS DEMENTIA LIKE?

How does it feel when you can't understand what others are telling you?  It must feel as though you are continually in a new situation, trying to figure out what is going on.  

 

Try an experiment today.  Pick up a novel and turn it to a page somewhere in the middle and read a couple of pages.  Do you understand who is who and why things are happening as they are?  It is probably confusing.  Your partner feels this way every day.  Just as you need to start from the beginning of the book to fill in the blanks, your partner depends on you to fill in the blanks for him or her.     (From the Book: When your loved one has dementia, A simple guide for caregivers. ISBN 0-8018-8114-5  Joy a. Glenner, Jean M. Stehman, Judith Davagnino, Margaret J. Galente, and Martha L. Green)


 

This newsletter is dedicated to Renee Pittsenbarger Larson Milonas, R.N., MSN, FNP passed away Sunday, Dec. 22, 2013, at 12:08 a.m., after the winter solstice. She was surrounded by loved ones and went with grace. She had a long battle with CADASIL.     Prior to her hospitalization, her stepson, Josh found her journal.   

She had written: 

"What you can do or think you can do, begin it. For boldness has magic, power and genius in it." - Wolfgang von Goethe.

Possible Support Group in the Philadelphia area  


A caregiver contacted us as she is trying to connect with as many CADASIL families in the Philly Area as possible. She would like to start up a Greater Philadelphia CADASIL support group for patients with CADASIL, and for caregivers, friends & colleagues of CADASIL patients. The meeting will be in the King of Prussia area during February or March. The intent is to: 1. Share personal stories and create a local, in-person community so we can better support each other and enhance our understanding of the disease 2. Create a local network of doctors & health care providers based on the community's experience to date and to grow that network via advocacy and awareness 3. Catalog the social services available in our network that can assist patients and families. Please contact us at info@cadasilfoundation.org  so we can forward your information.   

 

Contents of this newsletter do not necessarily reflect the opinions or policies of CADASIL Together We Have Hope Non-Profit Organization. The mention of trade names, commercial products, or organizations in no way constitute an endorsement. This newsletter is for informational purposes only and should in no way be considered medical advice.

 

 
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In This Issue
Study in Germany
Medical Updates
Disability Project Study
CADASIL 20 Years Later
CADASIL France
Disability Project Study
Caregivers
Rare Disease Day 2014
In Memory of . .
Neuro Film Festival
CADASIL Data
UK CADASIL Clinic
Raise Awareness
Fundraisers
Rare Disease Day 2014
Neuro Film Festival
Brain Initative

May 2005
CADASIL Together We Have Hope was recognized by the
 IRS as a 501 (c) (3) non-profit organization. CTWHH is eight years old.

  

July 1997
The CADASIL Together We Have Hope website was created 16 years ago.

CADASIL DATA 

 

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

Reported by Urchin

 

TAKE A LOOK AT HOW THE CADASIL REGISTRY DATABASE HAS GROWN OVER THE YEARS     

 

Confirmed Cases   


July 2006 -  523 

Jan 2007 - 568 

Aug 2007 - 702   

May 2008 -  796 

Apr 2009 -   858 

Mar 2010 - 1,005 

Dec 2010 - 1,087  

July 2011 - 1,162

Dec 2011 - 1,239  

Dec 2012 - 1,301  

Dec 2013 - 1,396   

 

Click here for more statistics 

  
Mark T. Nelson, Ph.D.

University Distinguished Professor & Chair, Department of Pharmacology, University of Vermont: Reports that he expects some significant insights into CADASIL.  

hon
 

WEBSITE RECERTIFIED HONCODE

 
Since September 2005, The Health on the Net Foundation Code of Conduct (HONcode) for medical and health websites addresses one of Internet's main healthcare issues... the reliability and credibility of information.  The CTWHH website was again re-certified as we continue to follow their high standards and ensure we only post factual information on our website.

Hugh Markus, University of Cambridge, Department of Neurology,

R3, Box 83, University of Cambridge, England:  Has relocated to the University of Cambridge Addenbrookes Clinic with his research team and the CADASIL clinic have moved from St George's. Patients can contact us at the Cambridge Biomedical Campus, Cambridge CB2 0QQ,
hsm32@medschl.cam.ac.uk  Tel:  01223 586661, Fax:  01223 217909 

 

   

RAISE CADASIL AWARENESS  


* T-shirts, U.S. Postage Stamps, Bumper Stickers, Tote Bags, and more.   Raise awareness by purchasing bumper stickers, T-shirts, real U.S. postage stamps, gifts and much more. A percentage of each sale will be donated to CADASIL  Plus, you will be letting others know about CADASIL.   Go to

http://www.zazzle.com/cadasil

to view these items now! 

 

We are looking for a graphic designer to create items for Zazzle.com   

 

 *  CADASIL bake sale

*   Crafts for CADASIL

*   Wristbands are available with blue with white writing on them. Please go to the website to order these. There is a minimal fee to offset the purchase of these wonderful awareness band.

 

 
RARE DISEASE DAY, FEBRUARY 28, 2014 
JOIN TOGETHER FOR BETTER CARE
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organizations at the national level.  This is an international worldwide event. This will be the third time that CADASIL will be represented at Capital Hill. Thanks for those who attend and their dedication. 

 

Even if you don't have the chance to go to an event, make an impact today for Rare Disease Day across the nation. Raise awareness for CADASIL print out the National Organization of Rare Disease flier  with the logo for Rare Disease Day and submit a photo of yourself, someone else or a group of people holding the flier.   The aim is to show people observing Rare Disease Day in a variety of settings across the world. SUBMIT YOUR PHOTO TODAY! or for other ideas to the website at www.rarediseaseday.org
Deadline to enter is
February 26, 2014.
BRIAN INITIATIVE  
April 2013 - President Obama 
outlined a government-sponsored initiative to map the human brain, casting the proposal as a way to discover new cures for neurological disease and strengthen the economy. 
"Ideas are what power our economy," Obama said as he announced the proposal from the East Room of the White House. "When we invest in the best ideas before anybody else does, our businesses and our 

workers can make the best products and deliver the best services before anybody else." The project would use nearly $100 million in federal money over the next financial year to begin a long-term effort to better understand the mentality. Those funds will be included in Obama's budget proposal, scheduled for release next week, and would be combined with annual private-sector investments of roughly an equal measure.  To watch his speech go to click here,  

 

Current and back issues of the newsletters are available by clicking here. If you would like to comment or contribute an article, please call us. Thank you for those who contributed to this newsletter. Always remember you are not alone. 
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The Board of Directors wishes everyone a prosperous and healthy 2014!