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Letter-Writing Campaign
Guide
HHT Foundation International, Inc.
P.O. Box 329
Monkton, MD 21111
Phone: (410) 357-9932
E-mail: hhtinfo@hht.org
TABLE OF CONTENTS
Everything You Need to Know....................................................................................... 3
The Letter-Writing Campaign: Seven Simple Steps .................................................... 4
Frequently Asked Questions ......................................................................................... 5
Memory Joggers ............................................................................................................. 6
Fund-Raising Goals ........................................................................................................ 7
Sample Letters ................................................................................................................ 8
Sample Thank-You Postcard ......................................................... ......................... 1 0.
Sample Donation Form ................................................................................................ 11.
Participant Mail-In Donation Form............................................................................... 12
HHT Q & A's ................................................................................................................... 13
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EVERYTHING YOU NEED TO KNOW…
What is the WRITE ON for HHT Awareness letter-writing campaign?
Letter-writing campaigns are an easy and fun way to raise funds and awareness about
HHT. Your participation will assist us in funding family support services, research and
education while raising awareness for HHT.
Sending a simple letter requesting a donation makes a significant impact on funding
available for the foundation.
How does the WRITE ON for HHT Awareness letter-writing campaign work?
All you have to do is write a letter and send it to your friends, family members, business
contacts requesting a donation. Set a fund-raising goal.
All donations you receive need to be mailed to the WRITE ON for HHT Campaign post
office box:
Write On for HHT Campaign
P.O. Box 329
Monkton, Maryland 21111
You will need to complete and include the form on page 12 when you mail your donations.
How does the donor get thanked?
If donors send a contribution directly to the HHT Foundation, they’ll be issued a receipt
and sent a list of donors at the end of the campaign. If donors send their contributions to
you, thank them for the gift. To make your job easier, thank-you postcards have been
included in your package. There is space on the postcard for you to personally sign it. It
will also serve as a receipt for your donor’s tax-deductible contribution
You will be amazed at the amount of support and generosity that your friends,
family members and business contacts give you, simply because you sent them a
letter and asked for their support.
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THE LETTER-WRITING CAMPAIGN:
SEVEN SIMPLE STEPS
The most successful fundraising individuals are those with first hand experience with HHT.
Just send a personal letter asking for a donation on behalf of the HHT Foundation. Letterwriting campaigns are successful because it appeals to a good casue.
It’s very simple: Just take out your holiday mailing list, neighborhood directory or business
Rolodex and you are on your way!
A successful letter-writing campaign includes the following components:
#1. Photo of a Child or Adult with HHT Try to include a photo with your letter.
#2. Tell the HHT Story
Write about your personal experience with this
disorder.
#3. Ask for the Donation
Don’t be afraid to request a donation! You may want
to suggest donations as a benchmark.
#4. Return Envelope
Be sure to include a self-addressed (with your
address) stamped, return envelope to make it easy
for the recipient to send you a donation.
#5. Mail to People You Know
Send your letter to your friends, family, co-workers,
holiday list, business contacts, vendors or your
alumni list. Please refer to the Memory Joggers list
on page 6.
#6. Send In Your Donations
After collecting all of your donations; send them to
the WRITE ON for HHT Awareness.
#7. Mail Thank-You Postcards
Do not overlook this step. Tell the donor how much
they helped you raise and how appreciative you are.
Please refer to the sample letters included in this manual to help you get started. Do not
hesitate to contact us should you have any questions or need additional information.
Letter-writing campaigns can raise as much as $1,000, $5,000, $10,000 and $20,000.
Thank you for your participation in the WRITE ON for HHT Awareness letter-writing
campaign and good luck!
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FREQUENTLY ASKED QUESTIONS
How can my letter raise money to help the HHT Foundation?
Raising money is gained by following the aforementioned steps.
Should I set a fund-raising goal?
The HHT Foundation recommends that each participant set a fund-raising goal of $1,000.
Be sure to refer to page 7 for tips on how you can meet and/or exceed this goal.
Is it okay to send my letter to those individuals who have previously contributed?
Yes! Be sure to share with them how important their previous generosity was. Let them
know your personal fund-raising goal.
Is it okay to have the donors mail their donations directly to the HHT Foundation?
Yes! In order for the HHT Foundation to properly credit you for raising the funds, please
have the donor include your donation form (which has your name on it) with their
contribution. The HHT Foundation will receipt all donors who send contributions directly to
the office. PLEASE NOTE: the HHT Foundation has a privacy policy that will not allow us
to disclose individual gift amounts. However, at the close of the campaign, you will be sent
a list of individuals who donated to your campaign and the total amount raised.
What do I include in my envelope to friends and family?
Your letter (with your story), a self-addressed (with your address) stamped envelope, and
your personalized donation form (see page 11).
Where do I mail the donations that I receive?
See the Participant Mail-in Donation Form on page 12.
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MEMORY JOGGERS
WHO IS YOUR:
Name
Dentist
Doctor
Obstetrician
Pediatrician
Veterinarian
Accountant
Architect
Builder
Congressman
Insurance Agent
Lawyer
Minister
Delivery Person:
Mail
Paper
UPS
PEOPLE YOU KNOW:
Name
Actor/Actress
Air Traffic Control
Anesthesiologist
Antique Dealer
Art Instructor
Auctioneer
Bank Cashier
Brick Mason
Brewery Salesman
Bulldozer Operator
Bus Driver
Candy Salesperson
Carpenter
Caterer
Chiropractor
Computer
Programmer
Contractor
Crane Operator
Dance Instructor
Dental Hygienist
Dietician
Editor
Electrician
Engineer
Farmer
Fashion Model
Fire Chief
Fisherman
Furniture Dealer
Garage Mechanic
Golf Pro
Grocer
Industrial Engineer
Insurance Adjuster
Interior Decorator
Judge
Lab Technician
Librarian
Lifeguard/Swim
Instructor
Lithographer
Missionary
Mortician
Motel Owner/
Manager
Moving Van Oper.
Music Teacher
Nurse
Patrolman
Other Contacts______________
Number
PEOPLE YOU KNOW:
Office Manager
Military Friends
Baby-sitter and/or
Parents
Groomsmen/Ushers
Bridesmaids
Cuts our Grass
Dry Cleaners
Fraternity Brothers
Sorority Sisters
SchoolTeachers
PTA Members
Children’s Teachers
Parent’s/Children’s
Friends
Hunting, Camping
Friends
Landlord
Landscaping
Car Pool
Out of Country
Out of State
Pet Store
Health Club
Photographer
Rotary, Lions,
Jaycees
Store Clerk/
Management
Spouses’ Boss
Appliance
Repair
Neighbor
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Number
________________
SET A FUND-RAISING GOAL OF $1,000
Below are some fun and easy ideas on how your letter can raise at least $1,000. If you
have any ideas or suggestions, please be sure to share them with the HHT Foundation so
that we may tell others!
Matching Gifts
You can easily
raise $1,000!
Consider This…
 10 people make a $100 donation = $1,000
 20 people make a $50 donation = $1,000
 25 people make a $40 donation = $1,000
 40 people make a $25 donation = $1,000
Remind your donors to
inquire about their company's
matching gifts program. This
is an easy way to DOUBLE
or TRIPLE your campaign
total! Ask your Human
Resources department for
more information.
Contact These Local Organizations to Request A Donation:
• Kiwanis
• Knights of Columbus • Rotary
•Independent Order of Foresters
•Lion’s Club •Jaycee’s
•Mom’s Clubs
•Gun Clubs
Ask and You Shall Receive
Below are three important and simple rules to remember about asking for a donation for a
good cause:
 The #1 reason people give to a charity is because they are asked!
Give others the opportunity to support you in your fund-raising efforts.
 Ask people who have asked you to buy an item or make a donation to
their cause.
Who sold you Girl Scout cookies, frozen pizzas, gift- wrap, magazines, etc? Did
you make a donation to your neighbor's fund-raising efforts?
 Contact businesses that you frequent.
Ask your drycleaner, doctor, hair salon, lawn service or plumber. Look in your
checkbook to see who you pay on a regular basis and ask for a donation.
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SAMPLE LETTER TO A FRIEND
Dear Friend,
A sudden nosebleed for no explainable reason or daily nosebleeds. Visits to the
emergency room for transfusions. Bleeding from the tongue or worse, internally. Severe
hemorrhaging, stroke, brain abscess, heart failure or liver dysfunction. This is the reality of
an HHT sufferer. The real tragedy is that many people experience these symptoms yet do
not know what is wrong because they are misdiagnosed.
A lack of understanding about HHT, by the majority of health care professionals, leads to a
helpless feeling that we are alone in this constant battle against HHT. I truly consider the
HHT Foundation my extended family, and I along with many others have used their special
brand of care and TLC numerous times over the years.
I am sending you this letter because people like me across the country are joining forces to
send letters requesting a donation on behalf of the HHT Foundation. The foundation is
growing so each dollar helps. Imagine the difference we can make by asking everyone we
know for a donation. Any donation whether it is $1 or $100 will be appreciated and are tax
deductible. Please make checks payable to the HHT Foundation International and send
them to me in the enclosed addressed stamped envelope along with the donation form. I
will then mail all of my collected donations to the HHT Foundation.
Thank you for supporting me and others who are affected by HHT. Your donation is the
best gift I could ever hope to receive.
(photo if possible)
Much Love and Gratitude,
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SAMPLE LETTER WRITTEN BY A CHILD
To All My Friends:
I am Joey, and I am 6 years old. My brother Billy is 2 years old, and we have a disorder
called Hereditary Hemorrhagic Telangiectasia (HHT). My mommy found out she had HHT
after I was born and was sad that I got this disease which has no cure. Right now I only
get nosebleeds once in awhile. I have an AVM in my brain that so far is okay but could
cause problems for me later.
I know my mommy and daddy are worried about Billy and me a lot, but mommy says we
are really great kids! We love to laugh, give hugs, cuddle with our blankets and play with
our toys. I really enjoy helping my mommy clean when I can. What Billy and I would really
like to see is doctors diagnosing HHT correctly. Mommy said the HHT Foundation can do
that.
I am writing everyone I know to ask for a donation on behalf of the HHT Foundation.
Raising money to fund research programs and family support services is the best gift I
could receive. Please help me by making a donation to the HHT Foundation.
Thank you for helping us!!
Love,
P.S. All gifts are tax-deductible! Please make checks payable to the HHT Foundation and
send them back in the enclosed self-addressed stamped envelope along with the donation
form. Once I receive all my donations, I am going to mail them to the HHT Foundation. I
can’t wait to see how much money I raise!!
Will you send a donation:
$25.00______
$50.00______
$100.00______
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$200.00______
Other______
THANK-YOU POSTCARD
People can either send a contribution directly to the HHT Foundation or to you, which you
can forward. Before the deadline, you can collect all your contributions and send them at
once.
If donors send their contributions to you, you can send them a ready-made thank you note.
Below is a sample of the thank-you postcard. The card provides space for you to enter the
donor's contribution and to personally sign.
Please note that the HHT Foundation is a registered 501(c)(3) nonprofit charitable
organization. Contributions to the HHT Foundation are tax-deductible to the fullest extent
allowed by the law.
A few postcards have been included in this packet, but please call (410) 357-9932 or email hhtinfo@hht.org to request more cards. We look forward to hearing from you!
Don’t forget to affix a 1st class postage stamp to the thank you postcard.
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SAMPLE DONATION FORM
TO INCLUDE WITH YOUR LETTER
Yes! I want to help WRITE ON for HHT Awareness by making a contribution of:
_____ $25.00
_____ $100.00 (the number of letters I sent)
_____ $50.00
_____ $500.00
_____ $67.00 (in honor of my birthday)
_____ $1,000.00
_____ $75.00
_____ Other
Please make checks payable to the HHT Foundation and include my name in the memo
section of your check.
OPTION #1
I am collecting all WRITE ON for HHT Awareness donations and mailing them to the HHT
Foundation.
Mail this form and your donation back to me Before (insert date) at:
YOUR NAME
Address
City, State Zip code
OPTION #2
If you would prefer to send your contribution directly to the HHT Foundation, please send your
donation along with this form to:
Write On for HHT Campaign
P.O. Box 329
Monkton, Maryland 21111
PLEASE NOTE: Be sure to encourage your donors to include this form with their donation and
include your name in the memo section of their check so the HHT Foundation will be able to track
the gift properly.
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PARTICIPANT MAIL-IN DONATION FORM
Please complete this form and mail it and your collected donations to the address below so that it
is postmarked no later than (insert date).
Name
Address
City/State/Zip
Home Phone
Work Phone
E-mail
# Of Checks included in this envelope:
Total Donations included in this envelope: $
Are you expecting to receive any more donations?
No
If yes, please indicate how much money is outstanding: $
Please mail this form to:
Write On for HHT Campaign
P.O. Box 329
Monkton, Maryland 21111
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Yes
HEREDITARY HEMORRHAGIC TELANGIECTASIA
Q & A’S
What is the HHT Foundation?
The HHT Foundation is the only worldwide organization advocating for research was formed in
1991 to aid and support patients, to provide educational information to patients and medical
professionals about the more serious symptoms of this disorder and to fund genetic and clinical
research, provide education to patients and health care professionals and advocate for all of those
affected with HHT.
What is Hereditary Hemorrhagic Telangiectasia (HHT)?
Hereditary hemorrhagic telangiectasia (HHT), also called Osler-Weber-Rendu disease, is a blood
vessel disorder characterized by abnormal, direct connections between arteries and veins.
Telangiectases are small abnormal blood vessels, which appear as red spots often found on the
lips, tongue, fingers, intestines or nose. Larger abnormal blood vessels called arteriovenous
malformations (AVMs) can occur in the internal organs, most commonly the lungs, liver and brain.
How many people have HHT?
It is estimated that 1 in every 5000 people worldwide have HHT (OWR). 60,000 Americans have
HHT, that means nearly three times as many people have HHT than Lou Gehrig’s Disease, yet
there is minimal funding available.
How does a person develop HHT?
A person is born with HHT, but some symptoms tend to develop later in life. For example, GI
bleeding usually develops in the sixth decade, although it can occur earlier. (age-dependent
penetrance)
Will a child be affected if his/her parent is?
The inheritance of HHT works like this: Every time there is a pregnancy where one of the parents
has HHT, there is a 50-50 chance that the baby will have HHT, rather like tossing a coin.
However, since HHT has "variable expressivity", this means that even if a child inherits HHT, they
may not have the same symptoms as their parent.
What causes HHT?
HHT is the result of a defect in genes which are involved in blood vessel formation. Two genes
have thus far been identified, one on Chromosome 12 (ALK1) and the other on Chromosome 9
(endoglin; Chromosome 18; HHT and Juvenile Polyposis and two other genes that are suspected.
How is HHT diagnosed?
HHT can be diagnosed through genetic testing and/or clinical screening which includes:
1. NOSEBLEEDS, spontaneous and recurrent.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral
cavity, fingers and nose.
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3. INTERNAL LESIONS such as:
· Gastrointestinal telangiectasia (with or without bleeding)
· Pulmonary AVM
· Hepatic AVM
· Cerebral AVM
· Spinal AVM
4. FAMILY HISTORY- a first degree relative with HHT according to these
criteria.
The HHT diagnosis is definite if three criteria are present, Possible or suspected
if two criteria are present, and unlikely if fewer than two criteria are present.
What is the normal life expectancy of an individual with HHT?
Undetected and untreated lung and brain AVMs are a significant cause of life-threatening or
disabling complications in individuals with HHT. But….as long as the individual with HHT is
screened (and treated if necessary), then the life expectancy is normal.
Help us Fund Research to Cure HHT!
FINAL THOUGHTS
If you have questions or need more information, please contact us.
Call us (410) 357-9932
E-mail us at hhtinfo@hht.org
Visit our Web site at www.hht.org.
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