PRINTER'S NO. 3391
No. 591 Session of 2004
INTRODUCED BY LEACH, BALDWIN, BEBKO-JONES, BELARDI, BENNINGHOFF,
BISHOP, CORRIGAN, COY, CRUZ, CURRY, DALEY, DeLUCA, DENLINGER,
DeWEESE, DiGIROLAMO, DONATUCCI, FABRIZIO, FORCIER, FRANKEL,
GABIG, GEIST, GEORGE, GINGRICH, GOODMAN, HARHAI, BUNT,
HERSHEY, HESS, HUTCHINSON, KELLER, KENNEY, LAUGHLIN, LEDERER,
LESCOVITZ, MANN, MARKOSEK, McILHATTAN, MUSTIO, PALLONE,
PAYNE, PISTELLA, READSHAW, REICHLEY, ROSS, RUBLEY, SAINATO,
SCAVELLO, THOMAS, TIGUE, WALKO, WEBER, WOJNAROSKI AND MYERS,
MARCH 15, 2004
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
MARCH 15, 2004
AN RESOLUTION
1 Designating the week of March 15, 2004, as "Familial
2 Dysautonomia Awareness Week" in Pennsylvania.
3 WHEREAS, Originally reported in 1949, familial dysautonomia,
4 also known as Riley-Day Syndrome, is recognized as one of
5 several hereditary sensory and autonomic neuropathies; and
6 WHEREAS, Familial dysautonomia is an autosomal recessive
7 genetic disorder that affects the autonomic and sensory nervous
8 systems; and
9 WHEREAS, Evidence of the disorder may be noted from birth,
10 although neurologic deterioration progresses with age; and
11 WHEREAS, It is estimated that one in 30 people of Eastern
12 European or Ashkenazi Jewish descent are carriers of the
13 familial dysautonomia mutation which is found in males and
14 females equally; and
1 WHEREAS, Because familial dysautonomia has been noted almost
2 exclusively in Ashkenazi Jews, it is included as one of the
3 Jewish genetic diseases; and
4 WHEREAS, Current survival statistics indicate that a newborn
5 with familial dysautonomia has a 50% probability of reaching 30
6 years of age; and
7 WHEREAS, Familial dysautonomia affects tear production,
8 swallowing, temperature regulation and sensitivity to heat or
9 pain; and
10 WHEREAS, Other symptoms include excessive sweating, certain
11 gastrointestinal, circulatory and respiratory conditions, speech
12 and motor incoordination, poor growth and scoliosis; and
13 WHEREAS, Familial dysautonomia patients can function
14 independently in the absence of major disabilities with early
15 treatment; and
16 WHEREAS, There currently is no cure for familial
17 dysautonomia, but some available treatments can improve the
18 length and quality of life; and
19 WHEREAS, The mission is to find a cure for familial
20 dysautonomia by funding relevant research programs, to provide a
21 support network aimed at addressing the needs of patients and
22 families and to promote education and awareness programs in the
23 medical community and the public; therefore be it
24 RESOLVED, That the House of Representatives designate the
25 week of March 15, 2004, as "Familial Dysautonomia Awareness
26 Week" in Pennsylvania.
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