See other bills
under the
same topic
PRINTER'S NO. 1547
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
262
Session of
2019
INTRODUCED BY McNEILL, HENNESSEY, SCHLOSSBERG, HEFFLEY, KORTZ,
LONGIETTI, NEILSON, KINSEY, HILL-EVANS, HARKINS, FREEMAN,
MURT, READSHAW, MILLARD, YOUNGBLOOD, DiGIROLAMO, CALTAGIRONE,
SCHWEYER, BURNS AND KULIK, APRIL 25, 2019
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
APRIL 25, 2019
A RESOLUTION
Recognizing May 19, 2019, as "22q at the Zoo Worldwide Awareness
Day" in Pennsylvania.
WHEREAS, 22q11.2 deletion syndrome, also known as DiGeorge
syndrome, velo-cardio-facial syndrome and conotruncal anomaly
face syndrome, among other names, is a congenital defect in
which a small part of chromosome 22 is missing from the time of
conception; and
WHEREAS, 22q11.2 deletion syndrome is the second most
commonly known chromosomal abnormality, affecting an estimated 1
in 2,000 to 4,000 live births, yet it is often undiagnosed,
especially in adults; and
WHEREAS, Lack of awareness among the public and health care
professionals indicates there may actually be many more
individuals affected by this syndrome; and
WHEREAS, For a parent who has 22q11.2 deletion syndrome, with
each pregnancy there is a 50% chance of passing a copy of
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
chromosome 22 with a small part of that chromosome missing; and
WHEREAS, The 22q11.2 deletion is most often not inherited
from either parent and does not usually run in families; and
WHEREAS, If the condition is suspected, a blood test to
detect the deletion can be performed; and
WHEREAS, 22q11.2 deletion syndrome can affect almost every
system in the body and cause a wide range of health problems;
and
WHEREAS, Given the limited scientific studies of this
syndrome, it is difficult to know how severely a child will be
affected; and
WHEREAS, Symptoms of the disorder do not consistently appear
to be related to the amount of genetic material lost in the
chromosomal deletion, and therefore, there may be a great deal
of variation in symptoms among affected individuals; and
WHEREAS, Common symptoms of the syndrome include heart
abnormalities, distinctive facial features, recurrent infections
due to a weakened immune system, gastrointestinal issues and
kidney problems; and
WHEREAS, Many children will also experience developmental
delays, delayed growth and speech and learning disabilities; and
WHEREAS, While not all symptoms associated with 22q11.2
deletion syndrome are life-threatening, many children and adults
affected by the deletion have numerous medical problems during
their lifetime that may require specialized care; and
WHEREAS, Although there is no cure for 22q11.2 deletion
syndrome, there are many therapies and medical interventions
available to treat the symptoms, and, the earlier that the
symptoms are detected, the more that doctors can do to help; and
WHEREAS, Clinical variability, lack of knowledge and the
20190HR0262PN1547 - 2 -
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
unfamiliarity of clinicians with this syndrome all contribute to
delayed or missed detection, often resulting in avoidable
medical complications; and
WHEREAS, Promoting awareness of this complex syndrome among
the public and the medical community is an important step in
increasing the likelihood that a correct diagnosis can be made
early; and
WHEREAS, "22q at the Zoo Worldwide Awareness Day" is an
annual event organized and developed by The International
22q11.2 Foundation aimed at raising the public profile of this
poorly recognized syndrome; and
WHEREAS, This event first began in May 2011 in Philadelphia
and has since evolved into a worldwide phenomenon celebrated
throughout many countries; and
WHEREAS, Every year, volunteers, families and friends gather
at their local zoo, park or backyard to hand out fact sheets,
play games and show solidarity to those affected by 22q11.2
deletion syndrome; therefore be it
RESOLVED, That the House of Representatives recognize May 19,
2019, as "22q at the Zoo Worldwide Awareness Day" in
Pennsylvania; and be it further
RESOLVED, That the House of Representatives acknowledge the
individuals who participate in "22q at the Zoo Worldwide
Awareness Day" events and urge its observance throughout this
Commonwealth for the benefit of all individuals living with
22q11.2 deletion syndrome and their families.
20190HR0262PN1547 - 3 -
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26