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 ( Kimberly@fragilex.org ) 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:

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was

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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?

____________________________________________________________________________

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____________________________________________________________________________

6. Additional comments :

____________________________________________________________________________

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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: CentralCT@fragilex.org

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__

____

_____

______

_______

_____

______

_______