[Congressional Record (Bound Edition), Volume 154 (2008), Part 6]
[Extensions of Remarks]
[Page 8942]
[From the U.S. Government Publishing Office, www.gpo.gov]




   INTRODUCTION OF A RESOLUTION EXPRESSING THE SENSE OF THE HOUSE OF 
  REPRESENTATIVES THAT THERE IS A CRITICAL NEED TO INCREASE RESEARCH, 
    AWARENESS, AND EDUCATION ABOUT CEREBRAL CAVERNOUS MALFORMATIONS

                                 ______
                                 

                             HON. TOM UDALL

                             of new mexico

                    in the house of representatives

                         Tuesday, May 13, 2008

  Mr. UDALL of New Mexico. Madam Speaker, medical science has made 
great strides in unlocking the mystery of illnesses that have plagued 
humanity for centuries. Medical breakthroughs have helped control and 
eliminate diseases that once threatened the life and health of 
millions. Yet for all our progress, we still face threats that we do 
not understand and therefore cannot stop.
  One of the lesser known--but no less devastating--diseases is 
Cerebral Cavernous Malformation, also known as CCM, or Cavernous 
Angiomas. CCM's are caused by abnormal blood vessels that form 
clusters, known as angiomas, in the brain or spinal cord. If the 
angiomas bleed or press up against structures in the central nervous 
system, they can cause seizures, neurological deficits, hemorrhages, or 
headaches.
  In the general population, 1 in approximately 200 people has a 
cavernous angioma and about one-third of these affected individuals 
become symptomatic at some point in their lives. In some Hispanic 
families, however, the rate of prevalence is significantly higher. It 
is what is known as an autosomal dominant disease, which means that 
each child of an affected parent has a 50 percent chance of inheriting 
it.
  And Madam Speaker, tragically, for generations of these Hispanic 
families, that is exactly what has happened throughout the country, and 
especially in New Mexico. In New Mexico, this genetic mutation has been 
traced back to the original Spanish settlers of the 1580's and has now 
spread down and across at least 17 generations, resulting in what could 
be tens of thousands of cases of the illness in the state. In fact, New 
Mexico has the highest population density of this illness in the world.
  Unfortunately, and in some cases tragically, many of the carriers of 
the gene and even the disease are unaware. To make matters worse, New 
Mexico, and the nation, face a shortage of physicians who are familiar 
with this illness. This makes it dangerously difficult to receive 
timely diagnosis and appropriate care and puts potentially thousands of 
individuals at risk of a stroke, seizures, or even sudden death.
  One New Mexico resident, Joyce Gonzales, was diagnosed with an 
angioma in her cervical spinal cord and had it surgically removed three 
years ago. But this success story followed 15 years of pain and 
misdiagnosis. Tragically, Mrs. Gonzales's 9-year-old second cousin was 
not as fortunate, recently suffering a cerebral hemorrhagic death 
caused by CCM.
  Madam Speaker, much of the misdiagnosis of CCM, the inexact figures, 
and lack of knowledge in the medical community is attributable to a 
lack of research of the disease. NIH funds only eight projects on CCM. 
This, despite recent indications that staff at the National Institute 
of Neurological Disorders and Stroke believes CCM to be a ``paradigm 
illness,'' meaning research findings on CCM could apply to other 
illnesses that have similar characteristics.
  It is clear, Madam Speaker, that more education, awareness, and 
research is necessary on this disease. That is why I am introducing 
this resolution today to express the sense of the House of 
Representatives that there is a critical need to do exactly that; 
expand education, awareness and research of CCM. This is only a 
preliminary step in the fight against this disease. I believe a Center 
of Excellence is needed to provide the highest quality medical and 
surgical care for families with CCM. An expansion of the existing DNA/
Tissue and Clinical Database is also needed. The current database is 
underfunded, which means that they cannot accept all the samples that 
are offered. I will be working to establish both of those.
  In the meantime, Joyce Gonzales, Dr. Leslie Morrison of the 
University of New Mexico, and Connie Lee, the President of the Angioma 
Alliance, are on the forefront of the fight against CCM. It is my honor 
to join them in this fight by introducing this resolution today and I 
urge my colleagues to help raise awareness of this devastating disease. 
There is too much at stake to ignore it.

                          ____________________