2010 CADASIL CTWHH and ULF Family Conference

Held July 31st, 2010 in DeKalb, Illinois 

Thank you to the medical professionals who presented at this family conference  and to everyone who attended.

Letter from the board of directors

Agenda

Announcements: Paula Brazeal, ULF President, CTWWH Billie Duncan-Smith, William B. Rizzo ULF, and the Chairperson of the whole conference Swati Sathe, M.D., M.S.

Genetics of CADASIL,  William Rizzo, M.D ULF Chairman, 
Edwin Kolodny, M.D. University of Nebraska, Omaha NE
NYU Langone Medical New York, NY 
 
Migraine/Mood Disorders  Diagnosis and Testing 
Swati Sathe, M.D., M.S  Michael Wang, M.D., Ph.D.
NYU Medicine,  University of Michigan, Ann Arbor, MI
New York, NY  
Paula K. Brazeal ULF President Ron Brazeal ULF Executive Director
Sycamore, Illinois Sycamore, Illinois
Testing Young Adults with Known Family History Mrs. Sonia Reyes, Psychologist  Hospital Lariboisiere, Paris, France Future Directions for Therapies Marco Duering, M.D. Institute for Stroke & Dementia, Munich, Germany
 
Database Registry Anne Joutel, M.D
CTWHH Billie Duncan-Smith INSERM, Paris, France
Round Rock, TX
 
Raphael Schiffman M.D.  Management of Dementia & Personality Change
Baylor Institute of Metabolic Disease, Dallas, TX James Galvin, M.D. NYU

Personal experiences of patients, families and medical professionals who attended the family conference.

 

Phyllis wife of a husband 
who has CADASIL

Sara's view 
of the conference


Thank you for the kind words. It was my pleasure. It was great to meet all the investigators from different groups and the families. I am happy I got the opportunity to organize the meeting. Dr. Sawti Sathe.

 


Thank you for organizing the meeting and also for the great photo. I enjoyed the meeting very much and I think it was very useful. Best wishes, Raffi (Dr. Schiffmann)

 

Thank you soooooo much for this past weekend. Gary and I shared many tears on the way home (me mostly!). We finally KNOW we are not alone on our journey. YOU are an inspiration! You are AMAZING! THANK YOU THANK YOU THANK YOU! Blessings to you, Always~ Diane

 

At the CADASIL Family Meeting when you said we were the CADASIL family, as we posed for a "family picture" , I jokingly asked if we could call you "mom". I have seen that the title seems to have stuck. The title was meant to be a compliment and a term of Endearment. So I hope you don't mind.

     

It was a pleasure having you at the CADASIL meeting and hearing about the CADASIL foundation. I look forward to your contributions on the ULF Board. Bill

 

 

Thank you SO MUCH for putting on the conference in DeKalb last weekend. My husband and I learned a lot. While we have done a great deal of our own reading  information from the medical professionals. Personally, a big benefit of the weekend was meeting others with the disease. We felt like we were meeting family. All of the ULF people we encountered were cheerful, polite, and professional. We know it takes a large amount of time and effort to organize and manage a
conference like that, and we appreciate all that went into this one. Janet
Just wanted to thank you for what you did in Dekalb. I watched it via webcast and found it very interesting. And for being your first time speaking at an audience, you did very good :). Just as an FYI, I was diagnosed a month ago (I’m 30). My mom was diagnosed 3 months ago (she is 56).
Please keep up the good work! Kind regards
 
     

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