HomeMy WebLinkAboutM-82-02984
IOS
FOR THE ADVANCEMENT OF SCIENCE
RESEARCH AND KNOWLEDGE OF THE OCEAN
THE INTERNATIONAL OCEANOGRAPHIC FOUNDATION
3979 RICKENBACKER CAUSEWAY, VIRGINIA KEY, MIAMI, FLORIDA 33149
Telephone: (305) 36 1 -5786
Coble Address: INTOCFOUND
F. G. N•itLros; smt I if
March 11, 1982
' !'rnedrnt
' t5et Prnrdrnf
E M.m. ssll i it
y l'rrr P .rd,nt rz.d
E .SrrrrGery
•tall 1NI%% E GUIDERA
Honorable Maurice A. Ferre
City of Miami
BL RI -ON CIARr.
Vr,e Pr.ud.nt
City Hall
j` Tltom �S(T.o,rl,tn
l'rrr l'rrwbnt
3500 Pan American Drive
t ouci.AS ERu:x%oN
Miami, Florida 33133
Trnnnrrr
�i \KnvN H. l.t.\NI \Kn\vSKI
Ai gganfN'rrFuln
Dear Mayor Ferre :
BOARD OF TRUSTEES
i': Chal"n;niFl-r tll
On behalf of the Children's Genetic Disease Foundation and
(',It>RI4 S E JOHNSON
the International Oceanographic Foundation we would like to request
t.hnnnnn hr mfen
llv%-r xANbt RSUN
permission to participate in the next City Coamission Hearing scheduled
Att.\NUkRM.tt.A1.Ft.
for April 1, 1982.
A. MARVIN 11 R.Wt RMAN
Bt-RIO%CIARK
KARL W. CORRY
The purpose for our proposal is to receive financial assistance
I)url.l-aS E:RH.KSON
from the city for the use of the Marine Statium on May 1, 1982.
At_aN S. FIR,(,
GoRlit IN *E F„It1)
AI tRt.Il C. G,I-\SNt 1.1'R.
It is our intention to raise money for the Children's Genetic
ItItNCiR\NI
Mtl\,1_I.I.Ili IIGROS%FNOR
Disease Foundation, headquartered out of the University of Miami, by
FIIII\I\St.(;I.IoIR\
promoting a community event inclusive of Oceans Miami Week '82 known
Wit itsI.. s-O.nI \`
'i\IISI.. I\\'ll.ill
as the WackyVessel Voyage, a raft race.
Y v �
St.\io% t':. K,,vi NI.V
POOit-1.1Ill `
I'Ii1I II' I.f I111t 11111iH,-�R.
This week long oceans festival itself was designed with the
b••
.1\%It%(:. \11RRII1. JR.
intent to help change the image of a very negative Miami, a bringing
111,1\I\,II.01*11'III
together of community via the oceans, for which this city is famed.
Iltll\ It. PI RR% jR.
Itlt If\RIIIrOVI..IR.
The Children's Genetic Disease Foundation is a combination
I IIIIR rt I I RA RI(I o- I\ \
of children's diseases that desperately need money for research. To
Lim IRI111: St RIl'1'\II
obtain the Marine Stadium is vital to the conception of fund raising
"\ \'
F. ('. \\ \" " "
F.
for this most needed research program.
It \HHI\ ET.tilt\\\H 1. IR.
I I II I\I \\ I I. \S�\KI f fl1 11
Awaiting your favorable and prompt response, I remain,
CI I Ili \f. \%'l lilt
I! A. It. 1\l ut \I R
Sincerely,
Sk t%•\N\t
(KI
Diane M. Milford
Special Events Coordinator
DM/
PLANET OCEAN SEA FRONTIERS SEA SECRETS
e 82 - 298
What is Genetics?
Genetics is the science of inheritance. Research is
Important to getter define how our bodies function and
now traits are transmitted to our offspring.
What is a genetic disease?
A -genetic disease results from mistakes occurring
within an individual's genetic matenaf—the genes and
chromosomes They may affect structures in the
body, such as the brain, leading to mental retarda-
tion, or the heart, leading to congenital heart disease.
Genetic disease may also affect the metabolism of
the body.
VA
L'
PV 9, S
e 7 s Y 10 n II
« 11A a RL fitiT
u
o w e r o r
!L sa�
A, • ;'.l
Human Chromosomes
#tat are some examples of
genetic disease?
EAarriples include Down's syndrome (mongolism),
muscular dystrophy, cystic fibrosis, hemophilia and
Tay Sachs disease. Many genetic diseases are
tare, but taken together, are a leading cause of suffer -
mg, disability and death in chiidten. Genetic abnor-
malities are the basis of many forms of cancer, heart
di:.uase, mental retardation and mental illness.
Can your family be affected
by genetic disease?
Genetic diseases may occur in any family One in 23
Caucasians carry the gene for cystic fibrosis, one
in 10 Blacks carry the gene for sickle cell disease and
one in 27 Askenazi Jews carry the gene for Tay
Sachs disease
What can be done about
genetic diseases?
Research has provided treatment for many forms of
genetic disease This is particularly true for some
disorders involving the metabolism of the body. Many
diseases can be prevented by genetic counseling
arid laboratory testing But many require the expendi-
ture of more lunds tot better understanding, preven-
tion and treatment of the many forms of genetic
disorders
What Florida medical
schools will receive funds?
Florida's medical schools are located at the Univer-
sity of Miami in Miami, the University of South Florida
in Tampa and the University of Florida in Gainesville.
Your iunds help ine genetic research programs in .
genetic diseases at these medical schouls
A child with Hurler's syndrumu
How will the Children's
Genetic Disease Foundation
utilize the funds?
�
0
The Children's Genetic Disease Foundation (CGDF)
t
�
N
will supwrt protects in genetics for nuw ideas
:
V
and hypotneses to better understand and treat genetic
Z
detects. tt plans to tra.n students and young doctors
,
_
N
for careers in genetic research. The CGDF will help
Q
o
support medical faculty who do research and see
w0
0
patients, ,t will provide equipment and facilities needed
;
for testing and research.
;
Z
(D
i
a
a
What are the advantages of
this Foundation?
_;
CL
•
0
N
The CGDF raises money for research that directly
t
benefits children in Florida. Overhead costs of the
Z
FounCation are minimal. THE FUNDS WILL GO
¢
o
DIRECTLY TO GENETIC RESEARCH PROGRAMS AT
UL
U
FLURIDAS MEDICAL SCHOOLS.
Z
-1 he Ch1dren's Genetic Disease Foundation of Florida
U)
repie�,enls an idea whose time has come raise
U_
-
money through volunteers and concerned individuals,
uwi
c
groups. Ronda foundations and special protects.
Q
as
Keep the 04erhead costs low. And use the funds
U
C o
to directly support genetic programs and reseutch
U
o t
This is Ine way each donor can be sure trial a g:tt
Z
or ucrduesl will be fully utilized to better understand,
0
E m
treat at id prevent genetic disorders'
Ld
0
Paul J. Benke, MD., Ph.D.
J
Q
0(U
Director, Clinical Genetics
Ui
ro
Mailman Centel
d
University of Miami
Uj
(J)
m M
Schoul of Medicine
0
E Cr
Miami, Flonda
U
= iv
UJ
Z
C 0
o 0
w
c7
•
CU a
>.
'o
C.E
:
CoC
C*__Q
lO U
p�
°N'm
_0w
�a
,z
_
•
•L
L
Q
� w
�:
•
N
v
c
•
�.�{ -•
at L
¢�
Ca U
y
U>1
�,
4i
U
u
Q
L C
U 0
•
-C
�Z
PO
w
o_
m
I
g
g
N
r_
ss
vi•
ai
E
N
:
m
o
o
x
0
,
m
c°
0
C
a
p•
O
rJ
a
0
LL
0
o
uii
m
g
Sri
CV
g
g
C
ti
j
a
b9
to
N
N
Q
t
w
x
U
LU
a:
u.
<
1
I
L
U:
m
C
C
Cll
r
a
u�
7
Q
a
0
O
I
v
E
of
z,
a
U
I
Z
a
cn
a
What is the CGDF?
The Childrenls Genetic Disease Foundation (CGDF)
IS a gl0u;) of prolessional and lay people interested in
jurthelvig research in genetic diseaseln Florida
The CGDF is slatted by volunteers and involved
COMIllUnity-minded people.
Piesident ........ Paul Balogh
Vice-president ...............Barbara Lelka
Secretary ................... Louise Geiss
heasufer ....................
John Walker
Partial listing of CGDF
Board of Directors.
)nald Altman
Tt'ws A Baroody
Lois Biegelsen
Josephine Carlo
Mrs Patucia J. Cesaranc,
Emmett Coble
Mc & Mrs. Oscar Crouch
Mrs William 0 Cullom
Dr Donald Dooley
Mr &Mrs. Donald Hooper
Peachy Kellmeyer
Mrs James A Lanier 11
William Lehman, Jr.
Mrs. 1`14chardtvil. Leslie
Dr Arthur Maislen
Bou Matheson
Di Budge McKey
Dr & Mrs G. Wm. McMillan
Daniel A. Mica
Prof. James Motsky
Mt. & Mrs. John Peet
*illy Peterson
Mrs. Mark Poncy
Merle Richmond
Di Victor Schulman
James A. Scott
Mr & Mrs. Parker Thompson
Scientific Advisor ............ Dr. Paul Benke
Executive Director ............ Barbara Seligman
What is the purpose of
the CGDF.?
The Childton's Genetic Disease Foundation was
totmed ill older to tw!p Flotidas ctiddien with genetic
problems and to provide for research in causes, treat-
luent and Illefopy
The CGDF w;ll p,vven, genetic diseases in lull -ire gen.
e(atlons by feSejfctj,ljg methods of delection 11
Will help fund genetic research programs at Florida's
medical schools
Mailman Center,
University of Miami School of Medicine
-0
I.-
0
IL
0
C:
i;_—
C13
700
C:L
:3
0
L
(D
(1)
rz
(D
U)
b
0
a)
q:
(1) C'j
0 CO
t9
R
AOR
C: 0 Ili
to
UL
E -
ji N 'i
. 1.11
r
Vtip •* t'4
'z
RESEARCH PROJECTS
Down S ndrome Down Syndrome, also called Mongolism and Trisomy 21,
occurs 1 in 700 births and is one of the most corsnon forms of genetic
disease and mental retardation. Children with Down Syndrome usually hive
47 chromosomes. This research project is to discover factors that lead to
unequal chromosome division, and might be associated with the etiology of
Down Syndrome or conceptions with a chromosome number other than the
normal 46 (Trisomy 18, 13, X, Y, 45 XO). Elements necessary for this
study include: 1) Parents who have had multiple children or conceptions
with aneuploidy. These families are available. 2) An investigation of
microtubule chemistry in affected families. Microtubules are proteins
that join repetitively, attach the chromosome to a central structure, and
pull the chromosomes apart during the separation of cells. Defects in
microtubule chemistry and the mechanism of chromosome separation may be at
fault in Trisomy 21 and other chromosome disorders. This study may
determine whether there is a genetic susceptibility to unequal chromosome
division. 3) A study of factors that affect microtubule chemistry.
Environmental agents such as drugs, alcohol and caffeine may affect
microtubule chemistry in susceptible people, and interfere with chromosome
division.
Amniocentesis is not the answer for Down's Syndrome. More studies
are needed to understand the cause of unequal chromosome division and
Down's Syndrome.
New tests for detection of cystic fibrosis and other important disorders
It is now possible to make very specific antibodies against any
protein. Since disorders such as cystic fibrosis, myotonic dystrophy and
Huntington's Chorea appear to represent a genetic change in a protein; it
may be possible to make an antibody specific to the changes in proteins in
these and other genetic disorders.
This research project will 1) inject a mutant protein into mice, 2)
take mouse spleen cells, which form the antibody but have limited life,
and 3) join these cells with cells which have infinite life in the
laboratory, and 4) isolate the combined cells which make specific
antibodies and have infinite life and grow them to large numbers.
Antibody to a mutant protein is then purified. The technology will permit
prenatal detection of disorders such as cystic fibrosis and Huntington's
C?iorea not now possible by other techniques. Since cystic fibrosis is a
common genetic disorder (1/2000 births) and the carrier rate is 1/23,
screening the population for carriers may be feasible.
DNA Polvmor hisms DNA, or desoxyribonucleic acid, is the
fundamental genetic material. New techniques now make it possible to
distinguish minor variations in DNA, utilize this information in genetic
disorders distinguished by altered protein structure, and provide
information for early detection and prenatal diagnosis.
Various restriction enzymes, which are proteins that break DNA at
specific points, are utilized to digest DNA. This digestion is specific
for each enzyme, and changes in DNA leads to changes in the DNA digestion.
This technology permits the detection of changes of DNA, or mutations, and
enables pre -natal detection of disorders not now detectible by other
means. This technology has aided in the better understanding and
pre -natal diagnosis of two blood disorders, thalassemia and sickle cell
anrmia. It is applicable to a wide variety of genetic conditions where a
change or mutation is measurable in DNA but not expressed in an enzyme
activity. The first disorders to be studied are two disorders on the
X-chromosome, a form of mental retardation, and a form of hydrocephalus.
This technology will also enable the mapping of gene segments on different
chromsomes, and provide valuable information on the mechanisms of many
genetic disorders.
COSTS It costs about $20,000/year for 1 pro.ject for technical support and
supplies. Support is being sought for whole or partial projects.
�1
v� $2-298
t CH`1iL%:iEiq' S L �t :.i'IC ]iTBI''1�SE � 017.i4DATION
• �'` The Children's GenPtic Disczre !'c ur•da-,;i an is anon
-prof it,
,:tlu�''�
organization started in 19i9 to .:nd �t h of , ncti: irlans and - e��..,�cc
projects in genetics et•'Floridac f'edi cal` r_GhO,-)ls. I'lost four-
"i dations are single disease "oundat- onc. ands very few support pi-
lot project.,. The mp,joi bi rt:h- deft ct s f ounda„i on spends less ', z.•.'= -> ,
then 10% on -re-netreseerch. , The Children's Genstic , Disease :.,':• `'���.:
�oun,latien is the only foundation solely dQdicatsd to research.+•�?
Genetics is thc� sci.enCe of. ir.herit;ance. genetic dis-:
:,g r caca results from mistakes occurring within 2n ir.dividval's .';� ,�-`;
genetic' material ,' the- geres and`chromosnmes. '',The 'disease ;`. ,reflect, in structures' -of the body, such os the brain or the y �=
heaz•t;` or:,jt' may aff act. the' metaboli More than 2, 000•',ge
netie ,disorders are kr,oarn; ,,,arty of which can epuse severe prob-
loms.• : home cocr'mon Cenetie. disorders are Down Syndrome, also _
called monf%olisrc (1./700'births), ;;eningomyeloceie or spina bi-
fida (1/300), ',usoular Dystrophy (1/2500), Cystic Fibrosis
(1/2500), Sickle Cell blacks), Tay Sachs,Dis-
ease (l/2000) Jewish) anc' 3ic-mophilia. There a�_e genetic ccm- ;'d
?'cnants tU Ineny f ov-A.a: of tJEt�rt etsea re and cancer. ;o�'•
een directed to pilot.
- VGal on the f of lovAnF
lliie CdL'��' of 1!o'r;n :;y,)dr cv!e ;
�-,•ier c? etsct -on < st .-7 foi' Cy.sti.c Fi.b3 o: is,' with'a •`. ` `
.e:: o F '� �-.;;u::1 1)o: ,t : nr �e:I;ceo_:•le
7..:id1"� t�7 ;..�1;` C....• 1:. i. l:l�h �yCoF n :or&,E. disease;
'
- ra nee(7 eei for ! cn: _' (: oil o1) of the e( : tudies and £,d— ' •-�'e
dit�onal proj� its c ��i• �:ra
1+ny or. cn �z�:i� on Lrivin fLi-,t', to the Foundation nay request � '..
^�'.� t'rst • trc? fro to a sL•E�cif .c =�' s�ar::'� project.Those l ivi.rg funds'
,:.. q•
'.. •• ti:i.'1�. L)e'.').nfurmc d of.,.the ,:rre of the i esa�:'Tc,h.
.r..- •.
z.
�•
7A�
r
METROPOLITAN LADE COUNTY-FLORIDA
DADE COUNTY COURTHOUSE
73 WEST FLAGLEP STREET - SUITE 2G2
5TEPHEN P CL4P,K Mayor Mt4Mi, FLORIDA 33130
rpril 1, 1982
Honorable Members
Board of City Co mi_ssioners
City of t�iiami
Dinner Key
Miami, Florida 33133
Gentler:
!3C5 579-5305
As you may know, the Children's Genetic Discase Foundation
is a charitable organization headquartered out of the
University of Miami and specifically, the MajbTm Clinic.
The Organization is solely dedicated to the research of
genetic diseases, including Sickle Cells, Ann Syndrome and
Cystic Fibrosis,
As a der of the Foundation, I am gratified to lmcr„T that
the OceanoLwaphic Fouridaticm plans to produce a main event
for the commmity (a raft race) for the prurpose of funcsaisi_ng for
the benefit of the Children's Genetic Pi.!:!cas;e Founr',aticm, on
i iay 9, 1982.
Due to the fact that I mist chair the F.cning Hearing which is
in ;:,roccss t od-ay at the G-�imty Court House, I ;rn tmab] e to
;x rsir ;al lv r...ke ran pc,i,,-ance lvfore you today to ask your
consideration for finzincial assistance in the fom of waiver
of fees for the use of the ',-;arine Stadium on May 9, 1982.
I want you to knajthat I wholeheartedly support the petition
of the Foundation and respectfully request your consideration
of their request for this worthy cmuse .
y ycr�rs
'44*6 rtu e
SPC:ag Step'nen P. qCl-