Even Congress noticed

Seems there's been a move to increase education about my condition (always a good thing).
My ladyfriend, always vigilant, found this:

110th CONGRESS
2d Session
H. RES. 1193

Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.

IN THE HOUSE OF REPRESENTATIVES
May 13, 2008

Mr. UDALL of New Mexico submitted the following resolution; which was referred to the Committee on Energy and Commerce

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.
Whereas cerebral cavernous malformation (CCM), or cavernous angioma, is a devastating blood vessel disease that has enormous consequences for those affected and their families;
Whereas cavernous angiomas are malformations in the brain that cannot be detected easily except through very specific medical imaging scans;
Whereas those with a cavernous angioma should not take blood thinners or aspirin, but are rarely aware that they have the disease;
Whereas in the general population 1 in approximately 200 people has a cavernous angioma and about 1/3 of these affected people become symptomatic at some point in their lives;
Whereas there is a hereditary form of the illness, caused by a mutation or deletion on any one of 3 genes that is characterized by multiple cavernous malformations;
Whereas each child born to parents with the hereditary form of the illness has a 50 percent chance of having cerebral cavernous malformation;
Whereas a specific genetic mutation of cerebral cavernous malformation called the common Hispanic mutation has been identified, has been traced to the original Spanish settlers of the 1590s, and has now spread down and across at least 17 generations of families;
Whereas the State of New Mexico has the highest population density of this illness in the country, but Hispanic families and those of all other ethnicities throughout the Nation are at risk;
Whereas a person with cavernous malformations may go undiagnosed until sudden death, seizure, or stroke;
Whereas there is a shortage of physicians who are familiar with the illness;
Whereas this shortage makes it difficult for affected individuals to receive timely diagnosis and appropriate care;
Whereas the shortage of physicians who are familiar with the illness has a disproportionate impact on thousands of Hispanics across the Nation; and
Whereas cerebral cavernous malformation has been understudied by the National Institutes of Health and others: Now, therefore, be it

Resolved, That it is the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.