TWHH

CADASIL Together We Have Hope ensures that the increased knowledge and awareness for this disease will be always be updated as we receive it. We are totally dedicated in mailing out newsletters, information brochures etc. to patients families and doctors alike. We will help others get diagnosed and continue to push for cost effective methods to aide with diagnosis. This organization will recommend doctors who know about CADASIL and bring CADASIL families closer together with other CADASIL families. We will keep you up-to-date with the current research that is going on around the world, any treatments or eventual cure. This website for CADASIL is known worldwide. In the year 2005 there was 269,565 hits were documented.

In 1997 a website was created and resources were gathered into one area utilizing the Internet. A support group network was formed on the website to connect affected families with other CADASIL patients and to help educate their families and doctors. Doctors from around the world, then the scientific community responded. As the information become more widely accepted the demand increased. The medical and scientific community started to look at some of their patients in a different light. People throughout the world requested more information and contacted us. Members of the support group wanted to donate funds, have newsletters printed and wanted more correspondence on the illness. Because of these actions more patients are being diagnosed daily with CADASIL and medical professionals are now better understanding this disease, but thousands more still need to know.

The board of directors of CADASIL Together We Have Hope decided to keep the existing website as a personal account of CADASIL and as of May 10^th, 2005 continue to use the website for the organization. Our organization acts as an information clearing house, offering guidance on sources of information and knowledgeable assistance as well as creating and networking with families who can share their experiences and offer much needed support to other CADASIL families.

We will continue to work side by side with all CADASIL organizations, doctors, researchers and groups together and not as a single entity. The channels of communication need to be kept fully open for everyone concerned.

This non-profit all-volunteer organization was created May 10th, 2005 and the IRS was pleased to inform us that we are exempt from federal income tax under 501 (3)(c) of the Internal Revenue Code. Contributions to CADASIL Together We Have Hope are tax-deductible. We are qualified to receive tax-deductible bequests, devices, transfer or gifts. CADASIL Together We Have Hope is classified as a public charity. We will be starting to write grants for conferences and to raise awareness for CADASIL.

CADASIL Together We Have Hope Scientific Advisory Committee is comprised of respected practitioners, researchers and leading experts who are knowledgeable about CADASIL disease and similar disorders. Our members are from the U.S.A, France and England. We wish to thank the above scientific advisory committee members volunteering their time towards our mission!

Gregory M. Pastores MD is an Associate Professor of Neurology and Pediatrics at the NYU School of Medicine in New York, and Director of the Neurogenetics Laboratory for the Department of Neurology at NYU. He graduated from the University of Sto. Tomas in Manila (1983) and received his training in Pediatrics and Genetics at the Mount Sinai Medical Center in New York (1989) and at the Mayo Clinic in Minnesota (1991). He is Board Certified in Pediatrics (1989) and in Clinical Genetics (1993) and Clinical Molecular Genetics (1993). Dr. Pastores has extensive clinical and research experience in the diagnosis and management of patients with lysosomal storage disorders, CADASIL and with inherited diseases that primarily afflict individuals of Ashkenazi Jewish ancestry. He has also been engaged in the development and testing of treatment for Gaucher disease, MPS I and VI, Pompe disease and a late (adult)-onset form of Tay-Sachs disease (GM2-gangliosidosis). His current interest lies in the molecular genetics of inherited diseases that involve the nervous system.

Hugues Chabriat MD, PhD is Professor of Neurology at the University Paris VII in France. He received his MD from the Medicine Faculty "Cochin-Port Royal" and his PhD in Neuroscience from the Faculty of Science "Jussieu" at the University Paris VI. Dr Hugues Chabriat is working with Professor Marie Germaine Bousser and collaborates with Professor Elizabeth Tournier-Lasserve and with Dr Anne Joutel within "the French CADASIL team" for many years. He participated in the discovery of CADASIL and the identification of the mutated gene performed by the geneticists in France. His main research focuses on the imaging features of stroke particularly in small vessel diseases. He has made multiple contributions on the clinical, neuropsychological and imaging features of CADASIL and works on the dismantlement of small vessel diseases of undetermined origin.

Dr. James Grotta is Professor Neurology, Director of the Stroke Program and named the American Heart Association Physician of the Year 2006. He occupies the Roy M. and Phyllis Gough Huffington Distinguished Chair in Neurology,
is funded by the National Institutes of Health with grants to carry out research from the laboratory to the bedside and to train new fellows in the field of stroke. Dr. Grotta received his training at the Universities of Virginia and Colorado, and the Massachusetts General Hospital, and first joined the University of Texas Houston Medical School faculty in 1979. His research focuses on development of new therapies for acute stroke patients. This includes experimental laboratory studies on the biology of brain injury and recovery after stroke, and other approaches to reducing brain damage and improving recovery after stroke. He has also orchestrated the development of a collaborative network between University of Texas, Memorial Hermann Hospital, Houston Fire Department-Emergency Medical Services, and other regional stroke centers to increase the delivery of appropriate therapy to a larger number of acute stroke patients. Dr. Grotta, Chairman of the Department of Neurology at the Memorial Hermann Hospital in Houston has an active clinical practice based at Memorial Hermann Hospital focused on stroke treatment and prevention, and is a frequent invited lecturer at national and international meetings and symposia for the work he and his team have done in Houston.

Dr. Stephen Salloway is Director of Neurology and Director of the Memory Disorders Program. He is a Professor of Clinical Neurosciences and Psychiatry at Brown Medical School. He received his MD from Stanford Medical School and completed residencies in neurology and psychiatry at Yale University. Dr. Salloway has published more than 160 scientific articles,
book chapters, and abstracts including 3 books. He is the Past President of the American Neuropsychiatric Association a fellow of the American Academy of Neurology, and a member of the American Neurological Association, and he serves on national and international committees to develop criteria for stroke and vascular dementia. He is a scientific reviewer for the National Institutes of Health and for more than 25 journals, universities, and research foundations. Dr. Salloway is the Brown Combined Residency in Neurology and Psychiatry and co-Director of the NIH-sponsored Brown Dementia Research Fellowship Program. He lectures widely on CADASIL, dementia, and neuropsychiatric disorders. Dr. Salloway has received numerous grants for his research which focuses on a) clinical trials for prevention and treatment of vascular dementia, Alzheimer's disease, and mild cognitive impairment, b) studies of genetic and sporadic forms of microvascular brain disease and c) assessment of frontal behavior and executive function. Under his direction the Butler Memory and Aging Program has become a national referral center for the study of CADASIL. Dr. Salloway has established a CADASIL tissue bank in collaboration with colleagues in the pathology department at Brown. Studies with CADASIL brain tissue are leading to advances in understanding the molecular causes of small artery degeneration in CADASIL, which will hopefully lead to new treatments in the future. Dr. Salloway recently collaborated with an international group of CADASIL researchers to design and conduct the first controlled trial for CADASIL.

Raj Kalaria is Professor of Neuropathology (Cerebrovascular Pathology) at the University of Newcastle upon Tyne, UK and the Institute for Aging and Health, Newcastle General Hospital. He obtained his doctoral qualifications from King’s College, University of London, and the Royal College of Pathologists, UK, before completing his training in the USA. Professor Kalaria’s main scientific interests lie in risk factors and the neuropathologies of vascular dementia including CADASIL and Alzheimer’s disease. Professor Kalaria has published over 200 peer-reviewed articles and is editor of two books. He also serves as associate editor on the editorial boards of Alzheimer Disease and Associated Disorders and NeuroReport journals. He has been past Honorary Secretary of the British Neuroscience Association (2000-2004). He presently serves on the executive and scientific boards of the International Society for Vascular Cognitive and Behavioral Disorders, the International Brain Research Organization and the Alzheimer’s

Founder/Director
Billie Duncan-Smith has been involved as an advocate for CADASIL, since her husband Stephen was diagnosed with CADASIL in 1997. In 1995, it was discovered that her husband had a white matter disease, she did not stop Internet research until finally getting her husband diagnosed with CADASIL. Billie made multiple contacts throughout the world bring people and information together. She set up a website for CADASIL, in 1997 which is known worldwide and along with the logo for the website is “Together we have hope”.

Prior to her husbands illness Billie taught Youth Sunday School classes and was treasurer for a local area food bank. She organized area food drives. Billie has two daughters and a granddaughter. She has a degree in accounting and presently completing her degree in Computer Information Management. She was born in Warrington, England. Her father was in the United States Air Force for 22 years and her family traveled to Ohio, Okinawa, England and Texas. Her family retired in Northwich, Cheshire, England, where she met and married Stephen and immigrated to Austin, Texas in 1980 where she currently resides. For the past ten year she has been employed as a Professional Secretary, Registrar and Bookkeeper for the Round Rock Independent School District. She works on a disciplinary campus working with at-risk students from grades sixth to twelve. Her interests are computers, crafts and photography.

Director
Kalletta Pemberton -Volunteered in the neonatal unit at a local hospital while working on a nursing degree. Received Bachelors of Business Administration Degree. Worked as branch manger for a Credit union for seven years and Accounting Manager for the last five years.

Director
Deborah Ewald - Born and raised in Central Texas. She earned a Bachelor’s Degree in Elementary Education and a Master’s Degree in Curriculum and Instruction from Southwest Texas State University. She began working on her doctorate during the spring of 2001 at the College of Notre Dame where she was awarded a Certificate of Advanced Studies in May 2003. Taught first, third, and fifth grades and served as an a administrator at campuses in Texas and Maryland. During 2002-2003, she taught a senior level college elementary curriculum course for Towson University. Mrs. Ewald is married to Danny (who works for the Treasury Department) and has two daughters, Meredith (19) and Lindsey (17). Mrs. Ewald enjoys spending time with her family, riding roller coasters, and reading mysteries.