1. art and entertainment
2. shows and events
3. sports event

Fundraising
Guide
Tips on what to do and how to get started
CFC International
183 Brown Rd, Vestal NY 13850 607-772-9666
Revised 6/4/2012
Fundraising Index
Introduction……….….………………………………………………………3
A Quote to Remember……………………………………………………….4
How To Get Started……….…………………………………………….…5-6
Fundraising Tips…………………………..……………………………….7-8
10 Common Mistakes……….……………………………………….……….8
Resources to Assist You………..…………………………………….………8
Fundraiser Ideas...……….………………………...……………………..10-16
A. Golf Tournament………………………………………..……13-16
Fundraiser Registration Form…………………………………………….…17
SAMPLE: Letter of Intent…………………….………………….….……...18
SAMPLE: Matching Funds Letter & Document………………….……...19-20
Fundraiser Summary Form……………………………………….……...21-22
Understanding & Engaging the Media…………………………..……….23-33
SAMPLE: Letter to the Editor………………………………………...……34
SAMPLE: Press Release………..……………………………...…...………..35
CHECK LIST……….………………………………………….………...…36
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Introduction
CFC International was incorporated in 1999 as a support group for families
and others whose lives are touched by this very rare syndrome. Our goal is
to be a source of information so that we can raise awareness and educate
the public, the medical community as well as families about Cardio-FacioCutaneous Syndrome.
The mission of CFC International is
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To strive to help each other cope with the challenges of raising a child
with a rare and often medically involved disorder.
To act as a clearinghouse of information on all aspects of Cardio-FacioCutaneous Syndrome.
To publish newsletters, CFC Parents’ Guide and host a website.
To educate the general public, the medical profession, and government
agencies by disseminating information on Cardio-Facio-Cutaneous
Syndrome.
To facilitate research on this very rare syndrome.
CFC International is continually assessing the future needs among the CFC
community. Currently, our planned programs and projects include:
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Hosting conferences every two years
Funding the CFC International BioBank
Increasing outreach projects to new families
Fund research projects that focus on treatments for CFC patients
All of this does not happen by itself. It happens because there are many people
who are selflessly volunteering their time and finding ways to give back to the
group by hosting a fundraiser, participating in the Friendship Campaign or
contributing money. If you are interested in hosting a fundraiser with the
information include in this guide and a little imagination you can find a way
that will suit your family’s personality and help raise money to fund and help
our organization to grow.
Thank you.
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“A successful fundraiser has thick skin,
a soft heart, exceptional hearing, a
quick mind, a slow tongue and no
shame- at least when it comes to asking
for a gift!”
www.nonprofit.about.com
4
How To Get Started
1.
Anybody Can Do It… YOU Can Do It!
2.
Step by Step!
You can volunteer to host a fundraising event or project. With your help, CFC International
can continue to support, educate and expand our services for you.
Set a goal on how much you optimistically would like to raise.
Who is going to attend the fundraiser?
Your attendees could be family, friends, friends of friends and/or open to the community.
Who is going to help you with the fundraiser?
Ask for assistance from friends, family and local CFC International families.
What type of fundraiser are you going to hold?
Choose your fundraiser event based on your financial goal and who will be attending. Pick
from some of the ideas provided in this guide or come up with your own idea that reflects
your family’s personality.
When are you going to have the fundraiser?
Pick a date and set a deadline.
HINT: Check local calendars, school calendar, etc. to avoid conflicts that could limit your success.
Where are you going to hold the fundraiser?
If needed, secure a location to hold the event. Think about places you go frequently or have
a connection with that can provide the space for free or at a reduced rate.
HINT: Always ask the venue manager if they will be willing to donate the space. Remind them that this will
be great publicity for their business.
How are you going to do this?
Start by sending in your Event Registration Form to CFC International. Read this
information packet and ask for help and advice if needed.
3.
CFC International will Help!
CFC will send you brochures, a banner, CFC children photo collage poster and a
Powerpoint CD presentation. These items will help get the message out and let the people
attending the event know what their funds are supporting. Once your fundraiser is complete
CFC International will send thank you notes to all those who donated funds or services.
Experienced fundraisers are available to offer advice and support during the planning of
your event.
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4.
Raise Money $!
Don’t rely on just event ticket sales. Boost your event income with:
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Sponsor/Advertising sales for t-shirts, event programs and banner
300 Club raffle – or – 50/50 Raffle –or- Big Screen TV Raffle
Silent or Live Auction
Product sales
Food & Beverage sales
Matching Funds from Corporations
Contests/Challenges
Individual & Corporate donations solicited by family and friends
Letter writing campaigns
5. Get Attention!
Inform your local schools, religious and community organizations and businesses about the
event. Display and distribute event programs and tickets.
6. Alert Your Local Media!
Send a letter to the Editor of the local newspapers to inform them of the fundraiser event.
 See page 17-27 to Understanding and Engaging the Media.
7.
Have Fun!
A fun event is one that keeps people happy, involved and coming back! Be sure to have
lots of pictures of our CFC children so that everyone can see what all the fundraising is
about! Have entertainment for kids such as games, magician or face painting. Don’t forget
that music, food, prizes and raffles are great fun for adults.
8. Wrap it Up!
Turn in funds to CFC International. Include names and addresses of donors and sponsors
so that thank you notes can be sent. Donors and sponsors can use these notes as receipts
for donations.
Send your own thank you notes to volunteers, attendees, donors and sponsors. Make it
personal. Let them know how much you raised with their help. Be sure to tell them if you
are planning to repeat the event again. If you received media coverage, be sure to include a
copy of the article.
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Fundraising Tips
Making special events work for you involves more than just planning an activity and
charging admission. It is also involves building relationships with corporate
donors/sponsors, increasing community awareness of CFC syndrome and enlisting
volunteers. Here are some tips from the “Grassroots Fundraising Journal” for getting the
most out of your fundraising event.
1) Use the event to create other fundraising opportunities
In-kind contributions: Getting donations of food, printing, the venue, entertainment
and so forth cut costs and allow you to increase your net income from the event. Often
local businesses or corporations are more likely to donate a product or service than they are
to give you money if they have never worked with you before. Getting an in-kind
contribution for an event may be a way to get your foot in the door and start building a
relationship with the company
Sponsorships: Obtaining sponsorships are a common way for groups to increase their
net income at events. Both individuals and businesses can be solicited for sponsorships –
which is a financial contribution above and beyond the admission price. For example if an
event costs $25 to attend, the sponsor may pay $100 to $1,000 in exchange for varying kinds
of benefits. Depending on the level of sponsorships, these benefits may include extra tickets
to the event, the sponsor’s name on the invitation, ad in the program book, and a company
logo displayed prominently at the event. The incentive for businesses to purchase
sponsorships is to gain greater visibility among their target audience and benefit from the
goodwill publicity generated from the event. Most companies have a charitable donations
built in to their budgets for the year you just have to ask.
Non-Attendee Donations: When planning your event the date you choose will not fit
everyone’s schedules. Provide an opportunity for those who are unable to attend to support
your event. On the invitation, entry form or response card add a line that reads, “I am
unable to attend, but would like to contribute.” These added donations could be as much as
50% of your total amount raised.
Silent Auctions: A silent auction is a way to increase contributions from people
attending your event. Typically, organizations charge a ticket price that is affordable to a
broad range of people and have a silent auction at the event to give people the opportunity
to give more. Products and services are solicited prior to the event and auctioned off during
the course of he evening. A sign-up list is attached to each item, usually with a minimum bid
to start, and people bid (silently) by signing their name and the amount they are willing to
pay for them.
Ad Books – Ad books are booklets distributed to guests attending your event. They are
comprised primarily of paid advertisements, but should also include information about your
organization, a list of supporters, and the program of the event itself. The prospects for ad
sales include local businesses, vendors your organization uses, self-employed members and
donors who want to advertise their services as well as those who want to include a greeting
or messages as a way of showing their support.
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2) Use the event to bring people closer to CFC International and
strengthen relationships with current supporters.
Fundraising is about building relationships. People are more likely to give to CFC
International if they feel connected in some personal way and believe in our
issue/cause/project. Planning an informal event can strengthen already existing
relationships and result in larger gifts from some of the group’s loyal donors. Sometimes
events are the only time an organization can interact face-to-face with people who both
benefit from its work (members) and those who make it possible (donors). It is a great
opportunity for donors to speak directly to affected families and understand how their
contributions can positively impact their lives. Due to the rarity of CFC it is important to
invite other families from the group. Consider posting your event on the listserv. Many
members will be willing to travel a few hours to support your event. Having another child at
the event can make a significant impact on your guests.
3) Use the event for bringing in new donors.
The goal of every fundraiser is to attract new donors. In doing so, think about what would
motivate someone to attend who has little or no relationship to CFC’s cause. The program
and entertainment become more important as a draw, or you might form a host committee
of influential people whose involvement can attract those who have not previously
contributed to the organization.
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10 Common Mistakes
1.
Lack of planning
2.
Not asking for enough help
3.
Lack of publicity
4.
Bad timing
5.
Picking the wrong fundraiser
6.
Weak internal communication
7.
Low quality merchandise
8.
Letting problems fester
9.
Repeating the same unsuccessful fundraiser
10.
No reward for you and/or the organization
- Adapted from Common Mistakes, Kimberely Reynolds
Online Resources To Assist You
Fundraising:
www.fund-raising.com
www.fundraiser-ideas.com
www.gofundraising.com
www.fundraiserhelp.com
www.nonprofit.about.com
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FUNDRAISING IDEAS
Sell Paper Angels of Hope
Angels cannot only raise money, they can be used to advertise upcoming events and
increase awareness about CFC.
What: Cut out the shape of an angel (use a cookie cutter) on colored construction paper.
Photocopy pictures of children with CFC Syndrome and glue them on one side. On the
opposite side, put a label that has information about an upcoming fundraiser or a fact about
CFC Syndrome and the CFC International website and address.
How Much: Angels can be sold anywhere from $1 to $5 each.
Location: Angels can be sold at your local stores, businesses, schools, restaurants, bars
and family/friends workplaces.
Casino Night, Dance Marathon, Karaoke, Treasure Hunt,
Variety Show:
If you have an imagination then these events are great for you. Be creative, fun and
include as many people as possible.
Location: Ask the local American Legion, Kiwanis Club, VFW, Elks Club, church,
synagogue, YMCA or community center. These organizations could sponsor you or
donate the space.
Equipment: Casino games and audio equipment can be rented from a rental store. .
Display information, brochures and show CD.
Ticket Sales: Think about what the ticket is including. Does it include food, drinks
and entertainment? Casino night typically includes food, a certain amount of chips
and one drink. Karaoke and dance marathon attendees can also raise money by
soliciting sponsors.
Auction Items & Prizes: Ask local businesses for donations. Prizes for Casino
Nights are usually auctioned off using the play money that the attendees have won.
Silent Auction items can be a major portion of your total amount raised.
Auction People or Services: Not only can you auction items but you can auction
people and/or services. For example, date auctions, dinner with a local celebrity, or a
personal trainer to give sessions, can be fun and profitable.
Food & Drinks: You can increase your profit by having a cash bar or snacks for sale.
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Service/Item Sales - Bake Sales, Candle Sales, Car Washes,
Garage Sales, etc.:
Service Sales- Great when sponsored by scouts, church youth group, club or just
you and your friends. Display CFC information and brochures.
Inexpensive- Supplies are limited and the sale is mostly labor intensive.
Item Sales- Includes homemade or donated goods bought for resale, such as Krispy
Kreme Donuts, Root Candles, etc.
*One family raised $2,000 from a bake sale!
Costs- Homemade goods usually give best return for your money. If you purchase
items, you should be able to get at least 25% back at the end of the event. Make sure
unsold items are returnable!
Home Parties- Mary Kay, Tupperware and Pampered Chef are a few examples.
Look into these companies or similar ones; they usually have fundraising programs
available.
Cocktail Charity:
This event should be relaxed and fun. This is an adult only event, ages 21 and up
(unless it is held at a restaurant).
Location: Bar or restaurant. Ask the bar to donate all or a percentage of cover
charges to CFC. In addition, ask the staff to donate all or a percentage of their tips.
Volunteers/Equipment: Ask your friends, your spouse or a famous personality in
your community to guest host or bartend. (Okay this with the venue first.) Ask your
volunteers to wear the same thing. You can even design a t-shirt for them to wear
and sell during the event. Display CFC information, brochures and play CD.
Advertise: Advertise in local newspapers, community businesses and pass out flyers.
Announce where this event is going to be, who is going to be guest bartender/host
and that the money raised will go to CFC International. The bartender’s/host’s
friends, family, admirers and regular customers will come socialize and have a good
time while contributing to a good cause. Make sure everyone knows that tips go to
charity; most people will give more money if they are able.
Prizes/Auction: Collect items for door prizes or silent auction.
Ad Apparel: Sell t-shirts that you designed for the evening. Make the t-shirts
personal and use your imagination and creativity “I participated in Cocktail Charities
event for CFC”. Get t-shirt sponsors from local community businesses so there is
little to no cost for you.
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Wine Tasting, Chili Cook-Off, Spaghetti Dinner, Pancake
Breakfast, Open House, Picnic, Progressive Dinner Party:
These events have a lot of flexibility with themes and variations. Enjoy a casual picnic
or a formal dinner.
Location: If a hotel or restaurant is holding your event make sure to negotiate
services.
Tickets: Determine your target audience and market and publicize accordingly.
Provide enough lead time for scheduling and RSVP.
Themes: Valentine’s Day: Learn how to cook for or with your loved one. Neighbor’s
Reunion: Invite your neighbors for a fundraising dinner to rekindle your sense of
community. This would be great in any venue, home or even a progressive dinner. St.
Patrick’s Day: Have a party with a casual beer garden atmosphere. Taste of the Town:
Ask local chefs and bakers to showcase by preparing their specialty for a gourmet
variety dinner.
Additions: Don’t be conservative; add fun activities like auctions, raffles, games and
dancing. Display CFC information, brochures and play CD
Raffles
Sell raffle tickets to family, friends, school personnel, co-workers etc. Have CFC
information and brochures to show as you sell tickets.
A. 300 Club Raffle
You must sell 300 tickets. These ticket holders are given the opportunity to win $500.
Tickets- Have 300 tickets printed with tear off for name and phone number. Include
a CFC brochure with each ticket sale. Sell each ticket for $5.
Drawing- Make sure to pick a winner in a fair way; do it in a public place so no one
accuses the raffle of being rigged.
Fundraising Potential- Total income from sales is $1,500. $500 goes to the drawing
winner and $1,000 benefits CFC International.
B. 50/50 Raffle
Similar to the 300 Club Raffle, but you are not committed to selling a set number of
raffle tickets. Tickets can be any amount, usually $1.00 or 6 for $5.00. Half of
proceeds go to winner, half to CFC International.
*Check your town ordinances to see if you need to obtain a permit to hold a raffle.
Call your town/city clerk or town hall for information.
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Sport Tournaments
Choose a sport that you play, your friends play or you have connections with… golf,
tennis, bowling, volleyball.
Location: Depends on what sport. Have a display of CFC information, brochures
and play CD if possible.
Negotiate Services: Ask the sport’s facility for discounts or free services. An outside
sponsor could help donate funding for the facility.
Local Celebrities: Ask local radio, TV and sports celebrities to participate and raise
awareness about the event.
Corporate Sponsors: Ask corporations for sponsorship. In return advertise their
company and services at the event.
Shirts & Apparel: Work with a local company to design t-shirts, etc. to sell and/or
give away at the event. List sponsors on the t-shirts.
Prizes: Spice up the event by auctioning or raffling sporting goods and apparel.
Food and Beverage: Add snacks and drinks for additional income.
A. Golf Tournament
This event is one of the most elaborate however; it can be as small or
big as you feel comfortable. The next few pages will provide you with
suggestions and guidelines; this is not a mandatory checklist. Be
creative and mold this event to you and your players.
Additional Help: You will need about 8-10 people willing to
commit to soliciting donations from local businesses and meet for
status meetings. Additional volunteers will be needed the day of the
tournament, especially if some of your committee members are
playing golf. Use the talents of your members to assign positions.
Location: Where is the tournament going to be played? Pick your favorite golf
course or a location near your home and/or to the majority of your players.
Price for Location- Prices normally includes greens fee, cart and range balls.
Negotiate a price with the course to get the best deal. You have the negotiating
power- you can always take your tournament to another course! Get all the prices in
writing. The course should also supply scorecards, cart signs and scoring of the event.
Choose a format for play: The course will be able to suggest a format that works
best for your estimated crowd. You may want to do a nine-hole course if you don’t
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expect a large crowd. A regular 18-hole course can handle 144 players-- 36 fourperson teams for a “shotgun” start. For a charity event, a scramble works well. You
may choose competitive two person best balls, relaxing four-person scramble, scratch
or handicapped.
Pick a date: Choose several dates so you have options with the course. Contact your
local Chamber of Commerce, churches, synagogues and schools to make sure there
are not multiple other charitable events happening on the same date. Consider
weather conditions during the time of year you are considering the tournament-- the
last thing you want is a rain delay!
Pick a start time: Shotgun starts are usually at 8:00am followed by a lunch and
awards. Another option is a boxed lunch at registration, start at 1:00 and offer a
dinner afterward.
Food: If the golf course does not offer foodservices you many want to coordinate
meals at a nearby location. Profits from beverage sales can be a good way to raise
additional funds. If the course has it’s own concession, negotiate with them the price
of beverages and snacks. Inquire about donated food or drinks- will the course allow
that? Will they allow you to sell your own or to make a profit off of what they sell?
Price for Participants: A good rule of thumb is to double the fee the golf course
charges. Be careful not to get too high, especially for a first time tournament.
Advertising: Once you have the course, date, pricing and food confirmed, put
together flyers, posters and entry forms promoting the tournament for distribution.
You can work with a local printer or do them yourself on your home computer. If
you choose a printer, ask them to sponsor the tournament and discount the price in
exchange for free advertising by allowing them to add their business name in small
print along the bottom of the documents and apparel. Advertise at the golf course,
your workplace, restaurants, and any place where you think you can get players
and/or donations. Make sure you have complied with your state’s tax code for
charitable events. Each state is different and some require information to be printed
on literature requesting donations/contributions.
Sponsors: Decide what you want to charge for Hole Sponsors. Businesses and
individuals pay to have their name printed on a sign and placed at the tee box of each
hole. You can sell an unlimited amount of these. Each sign can be the same price
($50.00, for example) or you can set different levels of sponsorship. A local sign
company can tell you what the norm is for your community and design the signs. Use
photos of children with CFC on each sign to show why you are having the event. To
off set costs; offer the sign company hole sponsorship or a free foursome in the
tournament. The signs will be put in place prior to the start of play. Give yourself at
least one hour to do this, along with another person- unless the course will do it for
you. Be sure to keep the signs to use next year!
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Entry Forms: Entry forms should include name, address and telephone number of
each person playing. The address is important for any thank you cards mailed
following the tournament. Add your name, telephone number and/or e-mail address
so that you may be contacted for questions. Include the address where entry fees or
donations should be sent. State a deadline for entry forms and fees. The course will
require payment and full list of names about five days prior to the event, so have your
deadline a few days before that.
Prizes/Gifts: Ditty bags are small “goody” bags for each golfer. They usually include
items like golf balls, tees, key chains, sunscreen, bug repellent, coupons, snacks,
mints, etc. You may want to hand out a ditty bag to each golfer at registration. Prizes
for after play can include a random drawing for door prizes. Each player gets a free
chance to win. Put all players names in a bucket and choose two or three door prizes.
Prizes are also given for first through third place, longest drive, closest to the pin,
hole-in-one and a putting contest. All other donations can be raffled and/or used for
silent auction. 50/50 raffles are a fun way to boost the excitement after golf. *See
page 12 for Raffle details.
Logistics of the Tournament: During registration, you will need at least four to
six volunteers to sign in each player. Have a team roster for each volunteer so that
they know who is playing with whom, and who still needs to pay. Sell raffle tickets at
the registration table and on the food/beverage carts. Include the information about
golf bag drop off on the entry form. This will reduce congestion at registration.
The rules of the tournament will need to be announced prior to the start of play. The
golf course usually takes care of this. If possible, place the rules in each cart. Be sure
to announce that scorecards must be turned in at the end of play so that the course
can do the scoring.
After the tournament a volunteer emcee will be needed to announce the winners of
all the contests and the prizes, as well as the drawing for the raffle tickets. Have other
volunteers hand out the items. Display CFC information, brochures and play CD
Things to think about:
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Give your committee three to six months to plan this event.
Get all prices and negotiations documented!
Give each committee member a notebook with his or her responsibilities
(think about their connections & interests) and forms they may need. For
example, ditty bag item form, hole sponsor form, flyers, tournament entry
forms, auction items, raffle items etc.
Be prepared to handle a lot of cash. Provide volunteers that you trust to carry
moneybags with change. Have one person assigned the task of collecting these
bags and holding all the cash.
Communication is very important during the tournament. Walkie-talkies may
help keep communication open and smooth.
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Contact a local car dealership to offer a car to win for a hole-in-one on a par
three hole. Most dealerships will do this and provide their own insurance in
the event the car is won. Make sure to get all the requirements and be certain
the course can meet them. An insurance policy can be purchased.
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Online Resources To Assist You for Golf insurance websites.
www.hio.com
www.hole-in-won.com
www.usholeinone.com
Walkathon, Bike-a-thon, Motorcycle Poker Run:
These events are usually short, fun family events. They can be any distance and any
size you choose – from a family reunion, a walk or ride around the
block to a community wide event.
Location- Choose a backyard, community park, field, zoo or a
school track for the startup registration area.
Prizes- Ask local businesses to donate prizes to give to the
individuals that raise the most money for the event.
Additions- Provide food, entertainment, games and raffles etc. at
the end of the event.
Ad Sales- Sell t-shirts, sponsor ads, sign ads and program ads to
local businesses.
After the Walk/Ride – Use donated refreshments for prize award
presentation.
Cut-a-thon:
A terrific idea to get all members of the community involved with your fundraising
effort while getting a great haircut!
Location: Some national chain salons such as Cost Cutters host local fundraisers. If
you do not have one in your area suggest the idea to your favorite salon.
Fundraising: Negotiate with the salon on the price of the haircut. See if the salon
personnel will donate the tips they receive for their services during the event.
Additions: Consider selling food, beverages and/or t-shirts at each salon location.
Don’t forget to check with the salon to make sure this is allowed.
*The Central New York Chapter of the Autism Society of America held this
fundraiser in three Cost Cutters locations in July 2006. Their fundraiser consisted of
five hours of $7 haircuts.
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Fundraiser Registration Form
Host Family:____________________________________________________________
Address:________________________________________________________________
Phone:__________________ Fax: ____________________ Email: _________________
Name of Event:___________________________________________________________
Brief Description:_________________________________________________________
________________________________________________________________________
________________________________________________________________________
Date of Event (if known):_______________ Time (if known):______________________
Location:________________________________________________________________
Target audience for this event? (family, friends, community etc.)____________________
CFC Marketing Tools need:
Brochures #______
Banner Yes/No
Photo Collage Yes/NO
Powerpoint CD Yes/No
Projected Budget
INCOME Dollar Amount
Ticket Sales, Admissions, Etc.
Sponsors Ads (T-shirt, brochure, program ads)
Corporate Donations
Individual Donations
Raffle/Auction/Other
Total Income (Projected)
EXPENSES
Supplies
Location/Equipment Rental
Food/Beverage
Entertainment
Misc.
Total Expenses (Projected)
Projected Income Projected Expenses Fundraising Goal
The event organizer’s commits (i) not to establish a bank account in the CFC International’s name, (ii) not to purport
to commit the CFC Int. to assume any financial, contractual or other liability, (iii) to submit all net proceeds to the LSA
within 30 days following the event, (iv) to submit the fundraiser summary within 30 days following the event, and (v) to
work with CFC International to ensure that all information given to the public about CFC Syndrome and the CFC
International is accurate and appropriate.
Organizer’s Printed Name
Signature
Send completed form to: Judy Doyle
CFC International
906 Laurel Glens Drive, Medina, Ohio 44256
**************************************************************************************
For Board Use Only: Approved
Additional Information Needed
Declined
________________________________________________
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CARDIO-FACIO-CUTANEOUS INTERNATIONAL
NON-PROFIT, INTERNATIONAL SUPPORT GROUP
183 Brown Road ~ Vestal, New York 13850
Web site: www.cfcsyndrome.org
SAMPLE LETTER OF INTENT
This letter can be used to request donations for prizes, auction items,
item or services for your event.
Your Name
Your Address
Date
Dear __________,
I am a mother of a child with a very rare genetic syndrome called Cardio-FacioCutaneous (CFC) Syndrome. On _______ we will be hosting ______________
____________________________to continue research on this extremely rare disorder.
To date our group of 107 CFC Syndrome families has privately funded our own BioBank
of DNA samples to help researchers unlock this complex puzzle. Dr. Katherine Rauen
and her colleagues at the University of California, San Francisco Comprehensive Cancer
Center, have identified the three genes responsible for CFC syndrome. Our parent funded
BioBank of DNA provided the researchers with the needed material to find these genes!
Our next step is now aimed at treatment programs to help CFC children. With hopes of
improved quality of life and increased life span we now embark on our next mission.
I am writing to your company to ask for your support through a donation _________
____________________________________________. Our hopes are to raise enough
money to immediately move forward with treatment programs.
Thank you for your consideration and hopeful support.
Sincerely,
_________________________
Your Name
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This letter can be used to request a sponsor or company to match some
or all funds raised at your event. Some companies already have charity
matching programs in place for individual employee donations. Remind
participants at your event to check with their employer and complete the
required paperwork. If your company does not have a matching
program in place this letter could be used to request matching.
SAMPLE MATCHING FUNDS LETTER
Letter should be on CFC International letterhead. Letter should include self-addressed envelope to CFC
International include CFC brochure, Matching Fundraiser Document and information about your
fundraiser.
Dear Sponsor (Name),
Personalize the letter and write about the person in your life who has CFC. Explain
your fundraiser and your relation to the company or person receiving this letter.
The CFC International is a nonprofit 501c (3) organization. It was founded in 1999
to provide support for families touched by this extremely rare genetic disorder.
Today, there are fewer than 200 known cases worldwide. CFC International is
working hard to financially sustain and support its mission. We rely on individual and
corporate fundraisers and donations to continue our work. Thank you for taking the
time to consider a corporate matching donation. If you would like more information
about CFC International or CFC syndrome visit our website at cfcysyndrome.org.
Sincerely,
CFC International
YOUR NAME, member and volunteer
19
SAMPLE MATCHING FUNDS DOCUMENT
*When filled out, make three copies of this document. One for the contributor, one for you and one for CFC
International.
CFC International
183 Brown Road
Vestal, NY 13850
USA
Telephone: 607-772-9666
Fax: 607-748-0409
The CFC International Matching Gift Form
Date:
*Name:
Company Providing
Match Name:
Street Address:
City:
State/Zip Code:
*Telephone:
*E-mail:
*Amount Donated
$_____________
*
_____________________
Signature of Contributor
*
_____________________
Signature of Event Sponsor
*MATCHING FUNDS
YES/NO
*
______________
Date
*
______________
Date of Receipt
*Required Field
20
Fundraiser Summary Form
Complete and return with your checks
Name:
Phone Number:
Email Address:
Name of Event:
Planning Time Needed:
Location (rented hall/park):
Date:
Time:
# People Participated:
Goal: $
2. Total Expenses: $
Cost to Attend: $
1. Amount Raised: $
3. Net Profit: $
(1 – 2 = 3)
Brief Description (use a separate sheet if needed)
1) Invitations or Promotion
Who:
How Sent:
Lead Time:
Follow-Up:
Thank You Letters:
2) Publicity
Before the Event:
After:
21
3) Sponsors (use a separate sheet if needed)
Who:
What item/s:
4) Prizes (use a separate sheet if needed)
What type of items:
How did you give them out?
5) Food & Drinks
What was offered?
Where did you get it?
6) Expenses (use a separate sheet if needed)
How much was spent and on what?
7) Income (use the attached sheet to document all cash and check donations)
Sources other than individual donations
8) Success
Would you do this event again?
What would you do differently next time:
Please attach all printed event material (i.e.: invitations, letters, thank you letters, articles, etc.)
Return completed form and checks to: Kayla Stein
7053 Deerwood Trail
West Bloomfield, MI 48323
22
UNDERSTANDING AND ENGAGING THE MEDIA
Thank you for considering providing a voice for awareness of CardioFacio-Cutaneous Syndrome and CFC International in your local
community. In trying to raise awareness, the news media can be a good
target audience to approach to further the voice of our network. While
the idea of being in the news may be exciting, it requires careful thought
and planning to clearly relay your key message. This information will
help to sharpen interview skills and talk about the personal impact of
advances in research while promoting CFC International.
A “Letter to the Editor” is probably one of the easiest ways to receive
awareness coverage in your community newspaper. Here are a few
guidelines to help you submit your letter:
Personalized letters are most welcome, attached are two samples for
you. Feel free to use the letters we've provided or use them as a
guideline to write a more personal letter. We'd like to stress that
personal letters - written in your own words- would be the best
option.
A “Letter to the Editor” should be between 150-225 words. Any longer
and you risk the newspaper printing only a portion of your letter.
You MUST include your name, address and a contact phone number
where you can be reached. Papers WILL NOT print your letter without
this information.
You should submit your letter to your local paper one or two weeks
prior to the date you want it published.
GUIDELINES AND TIPS
Reporters seek the basic ingredients of a story that they can sell to their
editors and that will capture the interest of their audience. Whether you
target reporters of your local community newspapers or editors at major
daily publications, they hold the promise of great rewards for raising
awareness of CFC syndrome and CFC International and, ultimately, your
community. Even if your outreach is to a small-town paper or a low-watt
radio station, the impact can be significant.
There is an abundance of ways in which to garner media attention for
your activities and for the benefits of raising awareness. These tips
should help you get the word out about CFC syndrome. If you stick to a
few general rules and spend a little time preparing, the results will be
great!
23
Plan Ahead for Success
What are your messages? What is the story you
want to tell? What are your most salient points that will interest
reporters?
Think about your story.
Who are your audiences? Which
media outlets reach the audiences that you want to share your story
with?
Decide whom you are trying to reach.
If certain “hot” topics in the
media pertain to your activities, make sure your voice is included in
the media coverage. Examples include issues surrounding health
topics. The “hot” topic could also be an event, such as an upcoming
CFC fundraiser that you are having.
Be able to identify timely opportunities.
Ways to
communicate with the media include: press releases, media
advisories, newsletters, speeches, special events, press conferences,
editorial board meetings and opinion essays.
Consider the tools you have to accomplish your outreach.
Think about your spokesperson.
Choose one or two people who can speak
effectively to the media.
Get to Know Your Local Media
You can send
information and photos to reporters at their local papers to bring
attention to our cause. For instance, a “CFC” student can send handwritten invitations to reporters to visit their schools and witness their
activities in person. Contact the photo desk at your local newspaper
and invite a photographer to take pictures of your daily activities.
Identify the health reporters at local news outlets.
Explain to editors what CFC syndrome is
about and how it affects your family and how rare genetic conditions
can affect the community. Be prepared with statistics and examples.
Meet with editorial boards.
Weekly and smaller daily local
papers will be more receptive and will be more likely to write longer
pieces or to do a series of articles. The reporters will be interested a
human-interest story about a family living the community with CFC
syndrome.
Don’t just focus on the major daily papers.
There
are more shows than the 6 p.m. news that spotlight health and
community events, including community programming, morning news
shows and special health and education programming.
Contact your local television stations’ news assignment editors, too.
24
How to Pitch A Story
This serves as your initial point
of contact with the media. Be creative and succinct, as you have a
brief opportunity to grab the reporter’s attention with the release. The
release should be created at least a week in advance of the event or
announcement, and should clearly convey who, what, where, when,
why and how (please see sample).
Develop a concise, creative press release.
Follow up,
ask if the reporter needs more information, has any questions, would
like a spokesperson to talk to, or would like to visit you.
It takes more than a press release to get your story published.
Reporters are more
likely to remember our cause if they hear from the same contact every
time.
Have one person be the reporters’ continual contact.
It is very helpful to know the general topic and
understand what the reporter's angle is, and then develop key
message points to address it. Make your main message broad and
compelling, using stories about your family and our organization as
models for the bigger picture. From time to time, re-evaluate your
message to make changes in style and strategy. Emerging
developments in research may require a different outreach plan or
efforts to reach a different audience. Take the time to solicit feedback
and critical analysis of your efforts so you can get a sense of strengths
and weaknesses and then work to refine the message, the delivery
and its impact. Do your homework before you call the reporter.
Know your topic.
Guiding Principles:
Families are central in the lives of those living with
CFC Syndrome
Peer support empowers families
Partnerships between consumers and professionals
creates powerful forces for change and advancement
Normalizing the life experience of those living with CFC
syndrome or other rare genetic disorders fosters
personal, economic and social competence and
autonomy
Clear, up-to-date information enables families to make
meaningful decisions
Meaningful progress in research requires consumer
involvement
Discover another local
angle and try again. Do not personally be discouraged if a reporter is
nonchalant or uninterested in your pitch.
Do not get discouraged with a lack of coverage.
25
Understand the Reporter’s Perspective
A majority of stories aim to
inform audiences on a topic. Thus, collect information and assist the
reporter in passing it on to the public. Start by developing your key
messages. How will they fit into the reporter's stated story topic? What
is it you hope the reporter will take away from talking with you? If
time permits, do a little research by talking with others in the CFC
group about the interview topic. Remember; during the interview you
can only speak for yourself, but talking with others may help you
think through your responses.
Gather the facts, convey the information.
Interviewees – parents, children diagnosed with
CFC syndrome, physicians – offer quotations and perspectives for the
reporter’s story and serve as experts and educators, helping reporters
to make sense of the facts.
Position the experts.
personalize the story. Reporters will find it helpful if
you can "personalize" your key messages. Think about the key
messages and then use the organization, condition or family to frame
the message and "humanize" your key points. How have the issues
affected you? Keep in mind the privacy of individuals who you talk
about. Remember to be natural, spontaneous and passionate.
Give it heart and
Being a resource to a reporter is a good
way for you to strengthen your relationship and enhance the
credibility of our organization. Help the reporter meet deadlines by
being accessible, respecting deadlines and providing timely
information. If during an interview you said that you would provide
additional information about a topic, do so as quickly as possible. If
you come across an article or information that may be helpful to the
reporter, do not hesitate to send it to them - even if they didn't
request it.
Make it easy for the reporter.
Develop Good Relationships with the Media
Remember that there may be many misconceptions about what it means
to have CFC syndrome or other rare genetic disorders. It is important to
help dispel misinterpretations when working with the media. During the
interview, be sure to:
 Clarify a question or response that does not adequately
reflect what you want to communicate.
 Point out what appears to you to be a misconception or
bias.
 Be ready to document your accurate statements.
26
Sometimes it be may be necessary for you to guide the conversation and
interview. This is especially the case if you begin to feel that the reporter
has a different agenda than you expected or has not done their
homework on the subject at hand. Always listen carefully to the
questions that the interviewer asks you. Give the questions careful
thought, pause, and then respond with the message that you feel is most
appropriate.
You do not have to know everything! If you feel uncomfortable with
a question or unsure about an answer, it is always best to be
honest about your feelings or simply say, "I do not know" and refer
the reporter to someone else.
At the end of an interview, you can ask the reporter to insert a "for more
information" statement at the end of the report that lists our network's
contact information.
CFC International
183 Brown Road
Vestal, NY 13850
Website: www.cfcsyndrome.org
Finally, don't forget to find out when the story will be run/aired. Be sure
to thank the reporter for the interview, whether or not you think the
interview went well. Once the story has been aired/published, view it
carefully and assess whether the reporter accurately captured your
comments. If you feel there was an error or misunderstanding, it's
important to contact the reporter, mention something positive and then
explain the issue. Use this opportunity as a springboard to get your
accurate message repeated. Use your best diplomatic skills in telling the
reporter what was correct and what was not.
Maximizing your interview
Working with the media can be an interesting and rewarding experience,
especially if you can allow yourself to relax. It always helps to remember
the motto “just be yourself." Convey your own interest and excitement for
your topic. It will make for a better interview and increase the likelihood
that the reporter will use your story.
When answering interview questions, take the opportunity to explain
technical terms and concepts in easy-to-understand language. Avoid
abbreviations or medical terminology that may be unfamiliar to the
audience. Also, repeating the basic points that you want to get across in
different ways can help to reinforce your message(s).
27
To avoid misunderstandings, keep the following tips in mind:
There is no such thing as "off the record". "Off the record" means that
you do not want a particular statement or fact to be quoted or printed.
Make sure to clarify with the reporters whether they will honor this
request. If so, let them know what is "off the record" prior to speaking.
In general, only utilize "off the record" with reporters whom you have
developed trust and rapport. Of course, the safest policy to follow is if
there is any language or content you do not want published or aired,
do not say it.
Prepare in Advance. If possible, obtain a list of questions to allow time
to prepare your answers ahead of the actual interview.
Notify the reporter of reasonable special needs accommodations.

Will transportation and/or assistance with travel
expense be needed?

If your child is being interviewed let the reporter know
that you would like to be present for this time.
Shape your basic take-home message. Think about how to
communicate this in a few sentences.
Prepare simple sound bite, and talking points before the interview.
Then keep your answers short, to the point, and free of technical
jargon. Answer the question in your first statement, and then
elaborate without losing the core point you are trying to make or going
on too long. Do not be vague or evasive.
Be prepared to explain CFC syndrome and the characteristics related
to it. Use simple and clear language for this. Assume that the media
or the public knows nothing about CFC syndrome or about the
characteristics in general.
Frame your message using accurate and positive language. Avoid
words with negative, value-laden, or hurtful stereotypes (e.g.,
references to a victim suffering from a tragic "genetic defect"). Use
people-first language that is respectful and affirmative rather than
offensive.
Stick to the message you want to communicate. Do not allow the
interviewer to veer you away from your main purpose. Do not answer
questions that you don't want to answer. Simply restate your
message, answering the question you had wanted to be asked,
choosing your words carefully.
Remember- you can say "no" to a reporter. You don't have to answer
every question or talk about particular topics. But beware that the
reporter might use your negative responses in a way you don't like
and can't control.
28
Always speak for yourself and from your own experience. Be careful
not to speak for someone else in your family or organization on
personal matters and controversial topics. They can and should
speak for themselves.
Understand the risks of going public. You can never take back what
you say. When speaking publicly about CFC syndrome or your family,
you may also indirectly be providing personal information about your
family. People may stop you on the street after seeing you on
television or reading about you and your family in the newspaper.
Think about the consequences of giving up your anonymity before
there is no turning back.
Ask to review your quotes prior to their use. They may not agree- if
they don't you may want to be extra careful in your responses or
decline the interview. Also, if photographs are to be used, you can ask
to see the final selection.
Distortions of comments and views do happen. Despite your best
efforts before, during and after the interview, be prepared for
distortions and inaccuracies.
Learn all about the news organization and reporters in your
community. Find out who covers what. Do they have a scientific or
medical background? What other medical stories have they done?
Keep a scrapbook of the media coverage of your family. Get
permission to take a "behind the scenes" photo during the interview.
Be sure to share you article and photos with the group for the CFC
newsletter.
Acknowledge, in writing, reporters who do a good job. You might even
be able to get your letter in the Letters to the Editor column by
sending letters of appreciation and comment to reporters.
Practice, practice, practice. Practice in your head, practice with a
tape recorder, practice before an audience. Because practice does
make perfect. Taking the time to prepare, evaluate, get honest
feedback and reflection will sharpen your ability to use your story
to represent the message of all those living with CFC syndrome
and other rare genetic conditions.
In all of your attempts to seek media coverage, remember that a
specific event, celebration or gathering is more likely to attract the
media's attention as opposed to a request for a story covering CFC
syndrome issues in general.
 Professionalism will win you points. Before phoning or sending a
letter, plan your words and your goals. Be specific, precise and very
clear. Ask a friend or family member to review your words to receive
feedback about clarity.
29
 A Press Release (See page 35 for sample) is known in the news
business as a handout. It doesn't have to be perfect, but it must
contain all the facts! Use simple sentences. Make the first paragraph a
summary of what the release is about. It should be three or four
sentences long and address: What? Why? Who? When? Where? How?
 Every news organization has a central receiver, a person who screens
the flow of incoming releases, calls and visits and determines which
have news potential. Learn who the central receiver is and cultivate
that person. Make an appointment to meet him or her personally.
Then, introduce yourself, state your business, and go. After you've
made the initial contact; reach these people with simple messages by
way of a news release.
 E-mail versions also must be simple. Graphics and attachments that
may cause newsroom delays or disruptions will not win friends.
Key Points To Remember
Honor their role --include a title in every address. In general, use the
following titles to address your releases, unless you know a particular
organization uses a different title that would serve well:
Daily newspapers: City Editor
Weekly newspaper: Editor
Shoppers: Editor
Magazines: Editor
Radio Stations: News Department
Television Stations: News Director
Don't try to save postage by putting more than one release in the same
envelope either. Since different stories are likely to be assigned to
different reporters, this may cause one release to be ignored. If you use
email, the same principle applies: send separate releases separately.
Timing:
Most feature departments (such as health sections) and
magazines have deadlines long before things appear in print. They need
to receive releases well in advance.
Ways to Raise Awareness with the Media
In an effort to take our message to the public, we are providing our
families with a number of different ways you can help raise awareness of
CFC syndrome via the media. In addition, we have included some tips
and guidelines for communication with the media. If we all do our part,
we will succeed in raising awareness within our own communities.
1. Press Release - Press releases are announcements to the media
(print, TV and radio) containing important information about issues or
events that they might not otherwise discover. Releases are intended to
30
get reporters interested in the story so that they contact you for more
information and report on it. There are seven basic elements that every
press release should have in terms of content and how it appears:
FOR IMMEDIATE RELEASE: These words should appear in the upper
left-hand margin, just under your letterhead. You should capitalize every
letter.
Contact Information: Skip a line or two after release statement and list
the name, title, and telephone and fax numbers of your company
spokesperson (the person with the most information). It is important to
give your home number since reporters often work on deadlines and may
not be available until after hours.
Headline: Skip two lines after your contact information and use a
boldface type.
Dateline: This should be the city your press release is issued from and
the date you are mailing your release.
Lead Paragraph: The first paragraph needs to grasp the reader's
attention and should contain the relevant information to your message
such as the five W's (who, what, when, where, why).
Text: The main body of your press release where your message should
fully develop.
Press Release Formatting Suggestions
Use 8 ½ x 11 paper with a minimum of one-inch margins on each side of
the page.
Use a Bold typeface for the headlines to draw attention.
Capitalize the first letter of all words in the headline (with the exception
of: "a", "an", "the", or prepositions such as: "of", "to", or "from"). The
combination of upper and lower case makes it easier to read.
Complete the paragraph on one page instead of carrying it over onto the
next page.
Use only one side of each sheet of paper.
Use the word "more" between two dashes and center it at the bottom of
the page to let reporters know that another page follows:
– more –
Use three numbers symbols immediately following the last paragraph to
indicate the end of the press release:
###
31
How to Send a Press Release
Plan to contact the media at least two weeks in advance of when you
wish them to run the Press Release, and then again a week before.
Choose stations and publications that will be interested in your
information or event.
Call the news assignment desk, explain the nature of your release and
ask to whom you should send, FAX or E-mail your release (either
"Features” or "Medical”). Make sure you get the correct spelling and title
of the person you wish to contact. Find out when he or she needs to
receive your release.
Use the sample Press Release as a guide. Feel free to edit the release and
add your specific activity information to make it more interesting to your
community. Be sure to add a contact name, an organization name
and a telephone number where indicated.
Mail, FAX or E-mail your release on time.
Tip: Make sure that the news you submit is of interest to the readers of a particular
newspaper or the listeners of a particular radio/TV station in your community. You
can
send the Press Release along with a personal letter, if you wish, that tells
a bit about your own experience with CFC syndrome so that they know it
is coming from a local person. For best results, follow-up with a phone
call the day prior to your event.
2.
“Letter to the Editor”: (See page 34 for sample) A letter to the
Editor is an easy way for you to make a difference. Not only are most
Letters to the Editor published, but also thousands of people read the
editorial section of papers each day.
3.
Event Story: Do you have a special event taking place? Let your
community newspaper, radio or television station know about it! For
instance, tell the reporter how CFC syndrome has affected your family
and many other families that you are aware of. If they seem interested,
make sure to have several contacts in mind so that the reporter has
plenty of interview subjects. This works well in conjunction with # 1, the
Official Press Release.
4.
Editorial Board Visit: Schedule a meeting with the editor and/or
health and medical reporter of your local paper. Bring another person
who is aware of CFC syndrome - try asking your pediatrician,
cardiologist, geneticist, etc. if they would be interested in sitting in on
this interview. Be prepared by taking an Official Press Release and any
other documents that you think will be applicable. Be sure to take
photographs of your children but it is probably best to leave the kids at
32
home for this visit. Provide current and timely issues parents are dealing
with (i.e. insurance coverage, accurate diagnosis, finding treatment and
finding information about CFC syndrome itself). These are the technical
issues papers may be interested in covering.
5.
Local Talk Radio: Many local radio stations have talk radio
community programs. Many of these programs are constantly trying to
fill airtime! Call the talk radio host and give him/her concise and unique
background information about CFC syndrome. If you're successful, be
prepared with facts and support data, particularly if it's a call- in show.
Contact CFC International if you need help gathering information for
your interview.
6.
National Media: Consider writing a cover letter encouraging
coverage of the CFC syndrome subject. Personalize your letter and
include an Official Press Release and a Brochure. Also, consider including
a photo of your child or yourself (realize your photo will probably not be
returned). Include in your letter a reason they should be interested in
this story. What segment of their audience would be interested in this
story? How does it relate to other current events? What is unique or
especially interesting or intriguing about this story? Don't be discouraged
if you don't receive a response!
It is our combined efforts that will someday be rewarded!
33
SAMPLE LETTER TO THE EDITOR
Dear Editor:
Cardio-Facio-Cutaneous International is working to raise awareness
about CFC Syndrome. CFC is a very rare genetic syndrome that was first
described in 1986. There are approximately 100 to 160 diagnosed cases
in the world, with one living right here in your community. CFC
International’s hope . . .is for families to feel less isolated and more
confident about raising their special child.
As with many rare syndromes there is little funding available for
researchers to explore treatments. Most common characteristics include
congenital heart defect, distinct facial appearance, sparse, curly and/or
brittle hair, skin problems, developmental delay, short stature, vision
impairments and eating problems.
Although there is no cure for CFC syndrome it is possible to treat many
of the medical problems. Treatment is based on the need of the child,
Members of CFC International around the world communicate with each
other for support. They are also the backbone of fundraising to increase
awareness and promote research. Please support (insert information
about your fundraiser)
For more information about Cardio-Facio-Cutaneous Syndrome or CFC
International visit our web site at www.cfcsyndrome.org.
Sincerely,
34
Sample Press Release
FOR IMMEDIATE RELEASE
CONTACT:
[insert your name]
CFC International
[insert your address]
Phone:
Fax:
Email:
Website: www.cfcsyndrome.org
TITLE OF EVENT
PLANNED FOR (insert date]
CFC International is pleased to announce the (last name) family of (your
city) is hosting [insert title of event], to be held [insert date, time and
location], in an effort to raise awareness and funds for Cardio-FacioCutaneous (CFC) syndrome, a rare, genetic disorder. The (last name
son/daughter, Your child’s name) is one of less than 200 cases in the
world. The characteristics (signs/symptoms) of CFC syndrome consist of
the following, in varying degrees: congenital heart defect, distinct facial
appearance, sparse, curly and/or brittle hair, skin problems,
developmental delay, short stature, vision impairments and eating
problems.
Include additional information about your family and your event here.
To learn more about Cardio-Facio-Cutaneous syndrome and CFC
International visit our web site at www.cfcsyndrome.org.
###
35
CHECK LIST
o Review Fundraising Guide
o Determine primary goals:
o Monetary Target
o Type of Event
o Possible Date of Event
o Fill out Fundraiser Registration Form and Estimated Budget and mail
to CFC International
o Get approval for event
When Approved:
o Organize yourself, volunteers and event.
Ask: Who? What? When? Where? How?
*See pages 5-6
o Request CFC brochures, letterhead, banner and Powerpoint CD
o Advertise and market the event
o Write letters to your local media about the event
*See pages 23-33
o Obtain Matching Gifts, Donations and Sponsors for the event
*See pages 19-20
o Hold the event
o Collect all donations and proceeds- mail to CFC International
o Request and send Thank You cards- write thank you notes to
volunteers and vendors who assisted with and donated to the event.
Send thank you notes to donors or let CFC International know that
you would like us to do this.
o Mail CFC International completed Fundraiser Summary, pictures
and name and addresses of sponsors and donors.
o Write an article for the CFC Newsletter.
o Start planning next year’s event to make it bigger and better!
36