PRINTER'S NO. 12
No. 26 Session of 2007
INTRODUCED BY LEACH, BEYER, BISHOP, BOYD, CALTAGIRONE, COHEN,
CREIGHTON, CURRY, DALEY, FABRIZIO, FRANKEL, FREEMAN, GABIG,
GALLOWAY, GEIST, GEORGE, GINGRICH, GOODMAN, GRUCELA,
HENNESSEY, HERSHEY, HESS, KENNEY, KULA, LONGIETTI, MANTZ,
MARKOSEK, McILHATTAN, MELIO, MILLARD, MOYER, MUSTIO,
M. O'BRIEN, PALLONE, PHILLIPS, RAMALEY, RAPP, READSHAW,
RUBLEY, SAINATO, SCAVELLO, SONNEY, STABACK, VULAKOVICH,
WALKO, WOJNAROSKI, YOUNGBLOOD AND SIPTROTH, JANUARY 29, 2007
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
JANUARY 29, 2007
A RESOLUTION
1 Designating the week of March 11 through 17, 2007, 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 27 people of Ashkenazi
12 Jewish descent are carriers of the familial dysautonomia
13 mutation which is found in males and females equally; and
14 WHEREAS, Because familial dysautonomia has been noted almost
1 exclusively in Ashkenazi Jews, it is included as one of the
2 Jewish genetic diseases; and
3 WHEREAS, Current survival statistics indicate that a newborn
4 with familial dysautonomia has a 50% probability of reaching 40
5 years of age; and
6 WHEREAS, Familial dysautonomia affects tear production,
7 swallowing, temperature regulation and sensitivity to heat or
8 pain; and
9 WHEREAS, Other symptoms include excessive sweating, certain
10 gastrointestinal, circulatory and respiratory conditions, speech
11 and motor incoordination, poor growth and scoliosis; and
12 WHEREAS, Familial dysautonomia patients can function
13 independently in the absence of major disabilities with early
14 treatment; and
15 WHEREAS, There currently is no cure for familial
16 dysautonomia, but some available treatments can improve the
17 length and quality of life; and
18 WHEREAS, The mission is to find a cure for familial
19 dysautonomia by funding relevant research programs, to provide a
20 support network aimed at addressing the needs of patients and
21 families and to promote education and awareness programs in the
22 medical community and the public; therefore be it
23 RESOLVED, That the House of Representatives designate the
24 week of March 11 through 17, 2007, as "Familial Dysautonomia
25 Awareness Week" in Pennsylvania.
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