nfxf learning series - fragile x syndrome · timeline . the following general timeline provides a...
TRANSCRIPT
Contents Overview ....................................................................................................................................................... 2
Timeline......................................................................................................................................................... 2
12 - 18 + months prior to the event .......................................................................................................... 2
9 - 12 + months prior to the event ............................................................................................................ 3
6 + months prior to the event ................................................................................................................... 3
4 + months prior to the event ................................................................................................................... 3
3 + months prior to the event ................................................................................................................... 3
4-6 + weeks prior to the event .................................................................................................................. 3
2 + weeks prior to the events ................................................................................................................... 4
Day before the event ................................................................................................................................ 4
Day of the event ........................................................................................................................................ 4
Post Event ................................................................................................................................................. 4
Budget Planning ............................................................................................................................................ 4
Revenue: ................................................................................................................................................... 5
Expenses: .................................................................................................................................................. 5
Sponsorships ................................................................................................................................................. 5
Speakers and Topics ...................................................................................................................................... 6
By Topic ..................................................................................................................................................... 6
Creating an Agenda ....................................................................................................................................... 7
Agenda Tips ............................................................................................................................................... 7
Creating an Announcement .......................................................................................................................... 7
Things to consider ..................................................................................................................................... 7
Folder Contents ............................................................................................................................................. 8
Folder Content Recommendations: .......................................................................................................... 8
Certificate of Attendance .............................................................................................................................. 8
Tips for creating a Certificate of Attendance: ........................................................................................... 8
Getting Feedback – Evaluation Forms .......................................................................................................... 8
Educational Evaluation Tips: ..................................................................................................................... 8
Templates & Samples.................................................................................................................................... 9
Overview The NFXF Learning Series coordinates local education opportunities organized by the Community
Support Network with national programs, including webinars, articles, conferences and videos, to offer
expanded access to consistent and updated Fragile X information to families and professionals. The
Learning Series delivers our shared mission of family support and raises the profile of our education
initiatives. This Learning Series guide is intended to facilitate CSN program planning by providing
budgeting and sponsorship guidance, timelines, usable templates and consistent branding. By
participating in the Learning Series, you are ensuring that families across the country have access to vital
information, expert advice and connection to the Fragile X community.
Timeline .
The following general timeline provides a planning guideline for your event. Keep in mind that while it is
important to put thought into food, décor and the meeting room, attendees will remember the
education, keynote speakers and new connections the most.
12 - 18 + months prior to the event • Select a conference committee
o Consider 2 subgroups, one to focus on logistics (room set ups and catering) and one
group to focus on programing (keynote speakers and speaker management). If you are
offering scholarships to your educational event, you may want a 3rd subgroup in charge
of the scholarship process
• Contact nearest Fragile X Clinic about collaborating on program
• Determine your budget for the event (See Budget Planning Guide)
• Create a list preferred speakers; gauge interest/availability
o Costs to keep in mind when contacting speakers
▪ Honorarium
▪ Travel
▪ Lodging
▪ Meals
• Create a list of potential site locations; conduct site visits
o Items to keep in mind when site pricing
▪ A/V costs (will there be a tech person on hand, are computers provided,
microphones, etc.)
▪ Can lunch/snacks be brought in from an outside vendor or are they part of the
site costs
• Create a list of preferred and optional dates
• Create a list of menu / catering options for the event
• Assess fees to determine registration costs (Include all speaker’s fees, travel, lodging, food in
addition to site fees, materials, food and childcare for the event)
• Create a list of potential event sponsors
• If you are planning to provide childcare for the event, be sure to include this in your planning
and costs.
9 - 12 + months prior to the event • Finalize and sign contracts for event location and speakers
• Contact Kimberly ( [email protected] ) to set up online event registration.
• Create Event flyer (See attached template)
• Submit online event form for a “Save the Date” email blast and to get information onto the
NFXF calendar
• Begin promotion of event with “Save the Date” emails/Social Media posts/postcards
• Create event agenda (remember to include breaks) (See attached template)
• Create Sponsorship form and begin outreach for event sponsors
• Create scholarship guidelines and application
6 + months prior to the event • Arrange for CEU credits, when possible
• Promote event through MailChimp or online email blasts, remember to reach out to schools,
special education cooperatives/departments, Centers for Independent Living, Therapists, Fragile
X Clinics
• Open Registration
• Touch base with site location
• Arrange travel/hotel for speakers traveling to the event
• Arrange lodging options for out of town attendees
• Create list of volunteer positions / submit request for VolunteerMatch Posting
4 + months prior to the event • Track registration
• Request materials that need to be printed
• Confirm AV requests by speakers
3 + months prior to the event • Email keynote speakers with details on travel, lodging, meals, room set up, agenda
• Create event program (See Template)
• Finalize printing needs and print date
• Create event evaluation forms
• Create signage for day of event
• If participants are responsible for their own lunch be sure to include local places to eat,
directions and distance – creating a map of dining locations is helpful. If you are anticipating
participants from out of the area who will be staying include a list of “things to do” while in
town.
4-6 + weeks prior to the event • Verify meals/snacks/catering for event
• Prepare registration packets, folder materials and name badges
• Walk meeting space, review set up for registration, meals, location of restrooms, emergency
exits, etc.
2 + weeks prior to the events • Email reminder for attendees with event times, location, meal information, parking instructions
• Verify and pick up printed materials / signage
• Follow up with event volunteers with times, responsibilities and confirm attendance
• Pick up pens/notebooks for participants
• Create name badge template for speakers and attendees
• Send out reminders to registrants with event details (date, location, parking, lodging for out of
town attendees)
Day before the event • Walk the meeting space with volunteers, pointing out key areas
• Set directional signs
• Prepare registration area
• Pick up cash for day of/walk up registrations
Day of the event • Relax! You’ve planned well and have everything in place
Post Event • Be sure all outstanding bills are paid immediately
• Send Thank You notes to keynote speakers and volunteers
• Meet with committee chairs to review event and take notes for future events
• Submit post-event form online
Budget Planning One of the first tasks when planning an educational event is to determine the budget. This will help you
make decisions about the best approach to planning your event.
REVENUE NOTES
1. Registration fees
2. Sponsorships
3. Exhibitors/Advertisers
4. Other
EXPENSES
1. Meeting space rental fee
2. Speaker fees & travel
3. A/V – mic(s), screen, projector
4. Food & beverage
5. Printing
6. Signage
7. Misc.
Revenue: 1. Ideally, the actual costs per person will be paid for by registration fees. However, depending on
your expenses this approach could make the event too expensive for parents & professionals to
attend. We recommend that you always charge a registration fee as even a minimal amount will
help with determining your headcounts for food/beverages, materials & meeting space set up.
2. Other sources of revenue include:
▪ Sponsorships* – local businesses/individual who help underwrite expenses in exchange
for benefits &/or recognition.
▪ Exhibitors/Advertisers* – commercial organizations &/or researchers interested in
accessing your target audience
▪ Other – Proceeds from prior fundraising events to help subsidize expenses
Expenses: 1. Research free or discounted meeting spaces at your local hospital or university. If you are
partnering with a FX Clinic, they may be able to provide meeting space at no charge.
2. You can minimize speaker fees & travel by featuring local experts knowledgeable about the
specific topic(s) you want to present. Many professionals & agencies can provide valuable
information and resources that while not FX specific can still be beneficial for families. Local FX
Clinic professionals can also present helpful information.
If you decide to feature well-known FX professionals, consult with them before you make any
other plans to confirm interest, availability and costs. There may also be opportunities to piggy-
back on other activities that they are bringing them to your area that would permit cost-sharing
i.e. a family who is paying for an individual consultation with school professionals – typically
held on a weekday (Friday is ideal) – with the educational event held on the following Sat.
3. Often included in hospital or university settings which is another reason to check these out first
for meeting space.
4. Contact local businesses for in-kind donations* of food & beverages, printing/signage and any
miscellaneous items. Offer sponsorship recognition in return for their generosity and include
their names in your program and event signage.
* See Sponsors/Exhibitor/Advertiser resources for detailed information
Sponsorships A corporate sponsorship for your event not only helps to off-set costs but is also a form of advertising.
Like media advertising, there is value in the number of impressions (people looking at the logos) and the
demographic of the people looking at the logo.
Potential sponsors can include companies that are doing a lot of local advertising, large public
companies, like utilities, that want to maintain good community relations, companies trying to gain
market share in a particular market, or new companies that are trying to establish their name/brand.
Research can be done through government directories, company websites, advertising directories and
local media.
Speakers and Topics Finding the right keynote speaker for your event can be one of the most challenging starting points for
groups. We’ve created a list of recommendations for you to help get you started. If there is something
missing from the list, please let us know so we can add it on!
Fragile X Professionals
Dr. Randi Hagerman – FX, FXTAS, Premutation Carrier Issues, Adults with FXS
Dr. Elizabeth Berry-Kravis – FX, FXTAS, Premutation Carrier Issues, Adults with FXS
Dr. Marcia Braden – FX, Adolescence, Educational Strategies, Girls with FXS, Adults with FXS
Tracy and Mouse – FX, SLP, OT, Sensory Processing, Classroom Strategies, Adapting Autism Strategies for
FXS, Hyperarousal
Dr. Debora Hall – FXTAS, Premutation Carrier Issues
Jennifer Epstein – Toileting, Education, Behavior
Dr. Craig Erickson – FXS, Adults with FXS, Medications, Clinical Trials
Jayne Dixon Weber – FX, School Strategies, Parenting Perspective
Cindi Rogers – Parenting Perspective
Dr. Vicki Sudhalter – Educations
Dr. Karen Riley – Education, Behavior
Brenda Finucane – Genetics
Laurie Yankowitz – Education
Barbara Haas-Givler – Education, Behavior
Stephanie Sherman – Premutation Carrier Issues
Also Recommended: Parent Panels – All FXS Topics
Local FX Clinic Doctor
By Topic
ABLE Accounts / Special Needs Trusts
Adult Issues (Jobs, Living Skills/Options, Transitioning to Adulthood)
Developing Independence
Developing Positive Relationships between Home and School
Education Strategies/Modifications
IEP’s
Learning and Behavior
Living with Differences in the Family, Focus on Family
Making Inclusion Work
Navigating SSI / Medicaid
OT – Sensory Processing
Positive Behavior Plans / Functional Behavior Analysis
Safety – at home and in the community
Self-Advocates
Toileting
Transitions to Adulthood
Transitions to High School
Transitions to Kindergarten
Transitions to Middle School
Creating an Agenda Having an agenda for your educational event is an important document you want to be sure to provide
for your attendees. This simple form is easy to create with tips on creating the perfect agenda below.
Agenda Tips • Provide plenty of white space on the agenda to make it easier to read
• Provide an adequate registration period. Be sure to anticipate a rush of attendees 10 – 15
minutes prior to the event start time. Be sure to have someone at the registration table
available after the start time for individuals who run late.
• Meeting facilitator should start the event with a welcome and introduction, thanks to the host
location and volunteers, and housekeeping details (bathroom locations, timing of breaks/lunch,
other important details of the day)
• Be sure to include a morning and afternoon break for all day events
• Provide a time for Q&A at the end of the event to allow attendees to get additional information
or clarification of information. You might also use this opportunity to ask for topics for future
educational events.
• Allow time for people to complete the evaluation form at the event
Creating an Announcement Creating an announcement that catches the attention of parents and professionals is important. Below
is a list of items to consider when creating the announcement, and we have included a sample
announcement template.
Things to consider • If food is being served, include instructions for those with special dietary needs
• Specify if child care will be offered. If offered, include who will be the child care providers, their level of expertise, the location in relation to the event and cost associated with the childcare.
• If you are offering scholarships for the event, include the details on how to apply
• Provide both an online and a mail-in option for payment (be sure to test the online registration platform prior to sending out the registration)
• Include contact information for questions, both email and phone number
Folder Contents Below are the contents to be included in program folders.
Folder Content Recommendations: 1. Meeting Agenda 2. Speaker(s) bio / handouts / materials 3. Your CSN brochure 4. Upcoming CSN and NFXF activities* 5. Nearest FXCRC clinic information 6. Local research trials/studies for families 7. Event evaluation form 8. Map of the area – if participants are on their own for lunch, include options for places to eat
with directions and distance. If you are expecting participants from out of the area, include a list of “things to do” while in town.
9. What is Fragile X Flyer * 10. Information about the NFXF*
*denotes materials/information that will be provided by the staff at the NFXF. To request information
please contact your Regional Leader.
Certificate of Attendance It is important to provide your participants with a certificate of attendance, when possible. Certificates
can be easily created and printed in advance to have on hand the day of the events. We have included
some tips and a template for you.
Tips for creating a Certificate of Attendance: • Create and print certificates early so there is time to sign each one and work through any
printing glitches
• Use cardstock or nicer paper to print the certificates
• Print blank certificates to fill in at the event for participants who do not pre-register
• Be prepared to save a PDF version of the certificate to email out to participants who leave early
or forget to pick up their certificate
• Have certificates ready at the end of the event for easy pick up
Getting Feedback – Evaluation Forms Getting feedback on your event helps you to know what went well and what areas to focus on for
improvement for future events. It is recommended that you include these in folder and have the
meeting facilitator encourage participants to fill them out prior to leaving.
Be sure to have a location for the forms to be dropped off at the end of the day.
Below are tips to consider and a template you can use to create your evaluation form.
Educational Evaluation Tips: • Be sure to include the evaluation form in your participant’s event folder
• Remind participants of the importance of filling out the form
• Don’t let a negative evaluation get you down
• Be sure to follow up with anyone who requests to be contacted
Templates & Samples Customizable templates have been created for the following:
• Agenda Template
• Announcement Template
• Registration Sample
• Evaluation Template
• Sponsorship Template
• Attendance Certificate Template
Hosted by:
Sample Agenda
Title of Educational Event
Date
7:30-8:30 Registration and Breakfast
8:30 – 9:00 CSN leaders- Introductions, housekeeping, other, introduce first speaker
9:00 – 9:30 Name, Title, Topic
9:30 – 10:30 Name, Title, Topic
10:30-10:45 Break
10:45-11:30 Name, Title, Topic
11:30-12:30 Lunch
12:30-2:30 Name, Title, Topic
2:30 - 2:45 Break
2:45-4:00 Question and Answers
When: Day, Date, Time
Where: Name of facility and Address
Who: Is it for?
COST:
SPEAKERS
Name, Title and title of what they will be presenting
What food will be provided?
Please let us know if you require Gluten Free or any other dietary restrictions.
Is childcare provided?
Are you offering scholarships?
Sign up today thru Classy
(Link)
Checks can be made out to Name/Address
Questions: Name, Email, Phone Number
Name of hosts – Name of CSN & Hospital/FX Clinic
Proud to Present
Title of Educational Event
Re
gistration
Nam
e:
Ad
dress:
City/State/Zip
:
Email:
P
ho
ne: - -
A
tten
de
e - p
lease check all th
at app
ly
Fragile X Fam
ily Mem
ber
Ph
ysician
Teacher
Therap
ist
Oth
er
Paym
en
t $6
0 p
er attend
ee
On
line R
egistra
tion
- CLIC
K H
ERE!
(or w
ww
.eventb
rite.com
, search “Fragile X
” if link is b
ad.)
Ple
ase R
egiste
r by O
ctob
er 2
9, 2
01
6.
In lieu
of O
nlin
e Registratio
n, p
ay by C
he
ck, mad
e payab
le to
: NFX
F)
CEU
cred
it & A
tten
dan
ce C
ertificate
available
on
req
ue
st.
Mail to
: Fragile X
Society o
f Co
nn
ecticut
Tamm
y and
An
dy Selin
ger 2
0 M
oh
egan D
rive
West H
artford
, CT 0
61
17
Fo
r add
ition
al info
rmatio
n call:
Tamm
y and
An
dy Selin
ger (86
0) 2
33
-19
04
O
r e-mail C
en
tralCT@
fragilex.o
rg O
n th
e web
: ww
w.face
bo
ok.co
m/Fragile
XSo
cietyo
fCT
On
the N
ation
al Fragile X Fo
un
datio
n w
ebsite:
http
s://fragilex.o
rg/com
mu
nity/co
mm
un
ity-sup
po
rt-
ne
two
rk/no
rthe
ast/fragile-x-so
ciety-o
f-con
ne
cticut/
Targetin
g Social Skills an
d
Be
havio
ral Strategie
s for
Scho
ol, W
ork an
d Fu
n
______________________________________________________________________
Featu
ring In
tern
ation
ally Ren
ow
ne
d
Fragile X
and
Au
tism Sp
ectru
m
Diso
rde
r Experts
Jen
nife
r Epste
in, P
syD
Licen
sed
Clin
ical P
sycho
logist
Jane
Thie
rfeld
Bro
wn
, EdD
Y
ale C
hild
Stud
y Jo
nath
an P
icker, M
BC
hB
, Ph
D
Bo
ston
Ch
ildre
n’s H
osp
ital
______________________________________________________________________
Saturd
ay, No
vem
ber 1
2, 2
01
6
8:0
0 am
- 5:0
0 p
m
Un
iversity o
f Co
nn
ecticut
He
alth C
ente
r K
eller A
ud
itoriu
m
26
3 Farm
ingto
n A
venu
e
Farmin
gton
, Co
nn
ecticu
t 06
03
0
__
__
__
__
__
__
__
__
__
__
__
__
__
__
__
__
__
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__
__
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__
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__
__
__
__
__
__
__
__
__
Pre
sente
d b
y
Wh
at will b
e p
rese
nte
d?
▪ Fragile X
synd
rom
e (FXS): th
e mo
st com
mo
n cau
se of
inh
erited
men
tal imp
airme
nt.
▪ Fragile X
-associated
diso
rders (FA
D), w
hich
result fro
m a
mu
tation
of a sin
gle gen
e with
in th
e X ch
rom
oso
me.
▪ R
ecent clin
ical trial resu
lts and
up
com
ing n
ew trials.
▪ Featu
res o
f th
e co
gnitive,
emo
tion
al, an
d
beh
avioral
ph
en
otyp
e of FX
S that lead
to b
eh
avioral an
d so
cial skill ch
allenges in
the sch
oo
l enviro
nm
ent an
d w
ork se
tting.
▪ Im
po
rtant
strategies
wh
en
teachin
g so
cial skills
in
a sch
oo
l con
text.
▪ B
ehavio
ral sup
po
rts that im
pro
ve target beh
aviors w
ithin
th
e scho
ol co
ntext.
▪ Strategies im
po
rtant to
develo
pm
ent o
f vocatio
nal skills.
▪ B
ehavio
ral sup
po
rts that im
pro
ve b
ehavio
ral fun
ction
ing
with
in th
e vocatio
nal settin
g.
▪ Featu
res o
f th
e
cogn
itive, em
otio
nal
and
b
ehavio
ral p
he
no
type o
f FXS th
at affect acqu
isition
of leisu
re skills.
▪ Strategies im
po
rtant to
develo
pm
ent o
f leisure skills.
▪ B
ehavio
ral sup
po
rts that lead
to im
pro
ved su
ccess with
leisu
re skills.
▪ A
pp
rop
riate tran
sition
issu
es to
b
e
prep
ared
fo
r em
plo
ymen
t.
▪ U
niq
ue issu
es fo
r day p
rogram
transitio
ns.
▪ Tran
sition
to
co
llege alo
ng
with
ap
pro
priate
acco
mm
od
ation
s and
transitio
n p
reparatio
n.
Age
nd
a
8:0
0 - 8
:45
: Registratio
n &
Breakfast
8:4
5 - 9
:00
: Welco
me
9:0
0 - 9
:30
: “FX 1
01
and
Dru
g Trials” (Dr. J.P
.)
9:3
0 - 1
0:3
0: “In
creasing Su
ccess at Scho
ol w
ith So
cial and
B
ehavio
ral Sup
po
rts” (Dr. J.E.)
10
:30
- 10
:45
: Break
10
:45
- 11
:45
: “Design
ing In
terven
tion
s to Su
pp
ort Skill
Develo
pm
ent in
the W
orkp
lace” (Dr. J.E.)
11
:45
- 1:0
0: Lu
nch
and
Netw
orkin
g
1:0
0 - 2
:00
: “Transitio
n to
Day P
rogram
s, Wo
rk and
C
ollege” (D
r. J.B.)
2:0
0 - 2
:15
: Break
2:1
5 - 3
:45
: “Enco
uragin
g Leisure
Skill Develo
pm
en
t”
(Dr. J.E.)
3:4
5 - 4
:00
: Break (co
llect qu
estion
s for P
anel D
iscussio
n)
4:0
0 - 5
:00
: “Qu
estion
s and
An
swers: P
anel D
iscussio
n”
(Dr. J.B
., Dr. J.E., an
d D
r. J.P.)
Wh
o sh
ou
ld atte
nd
?
Familie
s, edu
cators, th
erapists, an
d p
rovid
ers wh
o care fo
r ch
ildre
n an
d ad
ults w
ith fragile X
-associated
diso
rders an
d
autism
spectru
m d
isord
ers.
Ho
w m
uch
do
es it co
st?
$6
0 p
er perso
n, w
hich
inclu
des b
reakfast, lun
ch, an
d a
con
ference b
ind
er.
Dire
ction
s From
I-84
• Exit 3
9, righ
t on
to R
t. 4 East. R
ight at th
e 3rd ligh
t into
the
U
Co
nn
Health
Ce
nter.
• En
ter the ro
un
dab
ou
t; take the seco
nd
right. B
ear left at th
e fork; co
ntin
ue u
p th
e hill. C
on
tinu
e past th
e stop
sign.
Visito
r parkin
g is available in
or n
ear Garage 3
.
• En
ter the M
ain B
uild
ing. Take escalato
r do
wn
on
left.
Po
ssible
Acco
mm
od
ation
s
Farmin
gton
Inn
, 82
7 Farm
ingto
n A
venu
e, Farmin
gton
, CT.
Delu
xe Ro
om
Rate - $
83
. Reservatio
ns - u
se the “FX
S” G
rou
p C
od
e wh
en
makin
g reservation
s – Click th
e web
site o
r call 80
0-6
48
-98
04
; ww
w.farm
ingto
nin
n.co
m.
Co
nfe
ren
ce G
old
X Sp
on
sors
Sp
eake
rs
Dr. Je
nn
ifer Ep
stein
is a licensed
clinical p
sycho
logist an
d
health
service pro
vider w
ith m
ore th
an 2
0 years o
f
experie
nce w
orkin
g with
child
ren an
d fam
ilies. Sh
e
received h
er Psy.D
. in C
linical P
sycho
logy fro
m W
right
State Un
iversity, com
pleted
an in
ternsh
ip at C
MH
I Fort
Logan
, and
com
pleted
a two
year po
stdo
ctoral fello
wsh
ip
in D
evelop
me
ntal D
isabilities an
d C
linical P
sycho
logy at th
e U
niversity o
f Co
lorad
o, D
enver.
Dr. Ep
stein w
as a psych
olo
gist at the C
hild
Develo
pm
en
t U
nit at C
hild
ren’s H
osp
ital, De
nver, fro
m 1
99
6 to 2
01
0,
wh
ere she p
rovid
ed assessm
ent an
d th
erapy services fo
r a d
iverse ran
ge o
f clin
ical co
ncern
s. She
was
the
Lead
Psych
olo
gist at the
Ch
ild D
evelop
men
t Un
it at Co
lorad
o
Ch
ildren
's H
osp
ital fro
m
20
07
to
20
10
. In
her
private
p
ractice wo
rk, she h
as held
lon
g term co
ntracts w
ith several
scho
ol d
istricts as an o
utsid
e autism
con
sultan
t. In
ad
ditio
n
to
traditio
nal
child
p
sycho
logy
services,
Dr.
Epstein
specialize
s in treatm
en
t of n
euro
develo
pm
ental
diso
rde
rs inclu
din
g autism
spectru
m d
isord
ers and
genetic
diso
rde
rs such
as fragile X syn
dro
me. Sh
e h
as add
ition
al train
ing in
AB
A, P
ECS, TEA
CC
H, an
d is a certified
ESDM
th
erapist
and
certified
ESD
M
trainer
in
the
Early Start
Den
ver Mo
de
l, a com
preh
ensive, evid
ence
-base
d m
od
el of
interve
ntio
n
for
infan
ts an
d
tod
dlers
affected
b
y au
tism. Sh
e en
joys
wo
rking
with
fam
ilies an
d
bu
ilds
interve
ntio
ns to
add
ress sp
ecific areas of co
ncern
.
Dr. Jan
e Th
ierfe
ld B
row
n is an
Assistan
t Clin
ical Pro
fessor
at Yale Ch
ild Stu
dy, Yale M
edical Sch
oo
l, Directo
r of C
ollege
Au
tism Sp
ectrum
and
form
er Directo
r of Stu
den
t Services at th
e Un
iversity of C
on
necticu
t Scho
ol o
f Law. Sh
e has
wo
rked in
Disab
ility Services fo
r 37
years. She h
old
s an Ed
.D.
from
C
olu
mb
ia U
nive
rsity, Teach
ers C
ollege.
Dr.
Bro
wn
co
nsu
lts with
man
y families, stu
den
ts, scho
ol d
istricts and
in
stitutio
ns o
f high
er ed
ucatio
n. D
r. Bro
wn
has ap
peare
d o
n
Go
od
Mo
rnin
g Am
erica, CB
S New
s and
NP
R. Sh
e has co
-au
tho
red “Stu
den
t with
Asp
erger’s: A G
uid
e for C
ollege
Pro
fession
als” (20
09
), “The P
aren
t’s Gu
ide
to C
ollege
for
Stud
ents o
n th
e A
utism
Spectru
m” (2
01
2), an
d “B
ehavio
r M
anagem
en
t and
Self-Regu
lation
” (20
12
), alon
g with
man
y textb
oo
k chap
ters an
d article
s. Dr. B
row
n is m
arried an
d
has th
ree ch
ildren
, the yo
un
gest is a 2
4 year o
ld so
n w
ith
autism
and
fragile X syn
dro
me.
Jon
athan
Picke
r, MB
Ch
B, P
hD
, Join
t Ap
po
intm
en
t b
etwee
n C
linical G
enetics an
d C
hild
and
Ad
ole
scent
Psych
iatry at Bo
ston
Ch
ildren
’s Ho
spital (B
CH
); Asst.
Pro
fessor, H
arvard M
edical Sch
oo
l; Fou
nd
ing M
emb
er of
the In
ternatio
nal Fragile X
Clin
ic & R
esearch C
on
sortiu
m
(FXC
RC
). Dr. P
icker head
s the B
CH
Fragile X
Pro
gram,
pro
vidin
g ind
ividu
als and
familie
s affected b
y fragile X w
ith
evaluatio
n an
d care su
pp
orte
d b
y the late
st med
ical, ed
ucatio
nal, an
d research
kno
wled
ge. Dr. P
icker was th
e ch
airman
of th
e clinical co
mm
ittee respo
nsib
le for th
e d
evelop
me
nt o
f mo
st of th
e con
sensu
s do
cum
ents o
n
clinical p
ractice pro
vided
by th
e FXC
RC
.
Educational Event Evaluation
Event Name: _______________________________________
1. Please check one:
___ Parent/Grandparent/Guardian/Care-provider
___Educator or Service Provider (specify) _______________________________
2. Please evaluate the following: 1 (low) to 4 (high)
Overall effectiveness of workshop 1 2 3 4
The information is useful. 1 2 3 4
The information is relevant to my needs. 1 2 3 4
The resource materials are of high quality. 1 2 3 4
The presenters were effective. 1 2 3 4
3. What were the most valuable ideas you learned from this workshop?
_____________________________________________________________________________
_____________________________________________________________________________
____________________________________________________________________________
4. What are 3 steps that you might take when you leave here?
1) _________________________________________________________________________
2) _________________________________________________________________________
3) _________________________________________________________________________
5. What would you like to see in future educational events?
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
6. Additional comments :
____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
7. Would you like to be contacted?
Name: ________________________________ Phone/Email: ___________________________
Thanks for attending!
August 2016
Name
Position
Business/Organization Name
Address
City, State Zip
Dear Salutation,
Fragile X Syndrome, one of the Fragile X associated disorders, is the most common inherited cause of mental
impairment, ranging from learning disabilities to severe intellectual disabilities and Autism. Approximately
1.3 million people in the United States live with the health consequences of a Fragile X mutation. These
challenges result in substantial physical, emotional and economic impact to individuals, families and society.
“Targeting Social Skills and Behavioral Strategies for School, Work and Fun” will be the subject of our 9th
annual conference, to be held on November 12, 2016, at the University of Connecticut Health Center in
Farmington, Connecticut. We would appreciate your support in bringing this much needed informational
program to the families and professionals who live and work with Fragile X and Autism Spectrum Disorders
and their daily challenges.
Conference attendees will spend the day in workshops with Jennifer Epstein, Psy.D., Licensed Clinical
Psychologist, Hingham, MA; Jane Thierfeld Brown, Ed.D., Assistant Clinical Professor at Yale Child Study,
Yale Medical School and Director of College Autism Spectrum; and Jonathan Picker, MBChB, Ph.D.,
Director, Fragile X Program, Boston Children’s Hospital.
We are asking for your support to help minimize registration costs and to enable greater participation by those
who will benefit most – the families. We offered scholarships to parents in the past and would like to increase
our ability to provide additional scholarships this year. Please see the attached sponsorship opportunities. Your
consideration of our request is greatly appreciated with all donations tax deductible to the extent allowable by
law.
Sincerely,
Tammy and Andy Selinger
Tammy and Andy Selinger and the
Fragile X Society of Connecticut
20 Mohegan Drive
West Hartford, CT 06117
(860) 233-1904
Email: [email protected]
Web: http://www.fragilex.org/community/community-support-network/northeast/fragile-x-society-of-
connecticut/
Facebook: https://www.facebook.com/FragileXSocietyofCT
Name of CSN Group
(Conference Name) Sponsorship Opportunities
Platinum X Sponsor $2,500 and over
• Full page color advertisement in conference binder
• B/W logo on each page of the conference binder distributed to each participant
• Logo on mailed and emailed invitations to parents, professionals, and professional organizations
in (your state or surrounding states) after your commitment
• Logo on online registration brochure
• Information table at the conference
• Signage on conference presentation screen preceding sessions
• Signage at the conference
Gold X Sponsor
$1,000 - $2,499
• Logo on mailed and emailed invitations to parents, professionals, and professional organizations
in (your state or surrounding states) after your commitment
• Logo on online registration brochure
• Information table at the conference
• Signage on conference presentation screen preceding sessions
• Signage at the conference
Silver X Sponsor
$400 - $999
• Information table at the conference
• Signage on conference presentation screen preceding sessions
• Signage at the conference
Bronze X Sponsor
$25 - $399
• Company/Organization name mentioned in conference binder
• Signage at the conference
Certifica
te of Atten
da
nce
“Title of Ed
ucatio
nal Even
t”
__
__
___
__
__
__________________________
__
__
___
__
_
(Na
me)
Spo
nso
red b
y ________
________
______
________
________
______
_____
Co
nferen
ce Edu
cation
al Session
on
Fragile X Syn
dro
me fo
r __ H
ou
rs
CSN
leader n
ame ______
____
_____
______
_______
_____
___ C
SN lead
er nam
e ______
_____
______
_____
______
____ D
ate ____
_____
_____
_____
_
Co
-chair__
______
________
_____
______
_______
____
_____
Co
-chair__
____
_____
______
_______
_____
______
_______