THE GENERAL ASSEMBLY OF PENNSYLVANIA

HOUSE RESOLUTION

INTRODUCED BY SHAPIRO, MARCH 14, 2011

INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35, MARCH 14, 2011  

A RESOLUTION

Designating April 10, 2011, as "Familial Dysautonomia Awareness

Day" in Pennsylvania.

WHEREAS, Familial dysautonomia, also known as FD and Riley-

Day syndrome, is a rare genetic disease that affects the

autonomic and sensory nervous systems of children from birth;

and

WHEREAS, It is estimated that one in 27 individuals of

Eastern European and Jewish ancestry is a carrier of the gene

for familial dysautonomia; and

WHEREAS, The most striking symptoms of familial dysautonomia

are reduced sensitivity to pain and temperature and the

inability to produce tears; and

WHEREAS, It affects every major system of the body, causing

severe respiratory, cardiac, orthopedic, digestive, renal and

vision problems; and

WHEREAS, Children with familial dysautonomia lack the most

basic reflexes and instincts, resulting in an inability for

their bodies to function normally; and

WHEREAS, Children affected by familial dysautonomia cannot

control their blood pressure or heart rate, they lack the

ability to suck at birth and the ability to swallow properly and

are at a greater risk of developing pneumonia; and

WHEREAS, Familial dysautonomia was once thought to be a fatal

childhood disease with most patients expected to live to only

five years of age; and

WHEREAS, Advances in treatment have dramatically extended

life expectancy, but children with familial dysautonomia still

suffer from chronic and often debilitating symptoms that prevent

them from leading normal lives; and

WHEREAS, The average lifespan of the familial dysautonomia

population is approximately 15 years of age; and

WHEREAS, The major causes of death are the result of

pulmonary complications or sudden death due to autonomic

instability; and

WHEREAS, Due to medical advances, it is projected that babies

born with familial dysautonomia within the last five years will

have a 50% chance of surviving to 40 years of age; and

WHEREAS, There is no cure for familial dysautonomia, but

treatments are supportive and preventative; and

WHEREAS, Supportive therapies for familial dysautonomia

include medications to maintain and regulate cardiovascular,

respiratory and gastrointestinal function, and surgical

interventions that include fundoplication, gastrostomy, spinal

fusion and tear duct cautery; and

WHEREAS, General population genetic screening is now

available, and such screening can significantly reduce the

frequency of new cases of familial dysautonomia; and

WHEREAS, It is imperative that there be greater public

awareness of this serious health issue, and more must be done to

increase activity at the national, state and local levels to

promote screening and to support the patients as well as their

families; therefore be it

RESOLVED, That the House of Representatives designate April

10, 2011, as "Familial Dysautonomia Awareness Day" in

Pennsylvania.