SOTS Campaign Guide Final

							         STAMP OUT Tuberous Sclerosis
           Letter-Writing Campaign Guide

                              December 2011


Tye Hoffman
Development Coordinator
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Toll-free: (800) 225-6872
Ph: (301) 562-9890
Fax: (301) 562-9870
    HERE’S EVERYTHING YOU NEED TO KNOW…
The STAMP OUT Tuberous Sclerosis is a letter-writing campaign. This manual serves as a guide
for you on how to accomplish a successful letter-writing campaign.

What is the STAMP OUT Tuberous Sclerosis letter-writing campaign?
Participants will canvass the country with their letters in conjunction with the STAMP OUT
Tuberous Sclerosis letter-writing campaign to request a donation on behalf of the Tuberous
Sclerosis Alliance (TS Alliance). Letter-writing campaigns are a fun and easy way to raise funds
and awareness about tuberous sclerosis complex (TSC). Your participation will assist the TS
Alliance in funding family support services, research and outreach programs.

Imagine the difference we can make by uniting together for the STAMP OUT Tuberous Sclerosis
letter-writing campaign. Sending a personalized letter requesting a donation can make a significant
impact on the funding available for TSC programs. Just think, every dollar you raise is one more
dollar than the day before.

How does the STAMP OUT Tuberous Sclerosis letter-writing campaign work?
Anyone can join this national effort to help raise money for the TS Alliance. To participate, all you
have to do is write a letter and send it to your friends, family members, business contacts or
holiday list requesting a donation during the month of December.

All donations are collected by you and mailed to the campaign’s bank lockbox:

STAMP OUT Tuberous Sclerosis
Tuberous Sclerosis Alliance
P.O. Box 10426
Uniondale, NY 11555

How does the donor get thanked?
It is important to thank all donors for their gift. To make your job easier, thank-you postcards have
been included in your package for you to mail to your donors. 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. If
you need more thank-you postcards, please contact us and we will be glad to send you more!

You will be amazed at the magnitude 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.




                                                    2
               THE LETTER-WRITING CAMPAIGN:
                     SIX SIMPLE STEPS
The best fund-raising success stories come from children, adults, parents, friends, family and
volunteers affected by TSC. Letter-writing campaigns are successful because friends are asking
friends to support them in their fund-raising efforts. After all, if a friend or family member wrote to
you and asked you to support them and their cause, wouldn’t you give a donation?

All you have to do is take out your holiday mailing list, neighborhood directory or your business
rolodex and you are on your way! If you are writing a letter from your business, we encourage you
to write to your vendors that your company utilizes and ask them to support you.

A successful letter-writing campaign includes the following ingredients:


   1. Create a letter, greeting card or email with a personal touch. Tell your story and why it's
      important to you. Include a photo of your loved one with TSC.
   2. Go through your address book and/or contacts list and send it to everyone you know.
   3. Include a self-addressed stamped envelope to make it easier for people to send a check
      back to you. Don't forget, the TS Alliance can provide printed donation inserts to include in
      your cards and letters.
   4. Create a fundraising web page (post the link in your letter, card or email) and let people
      make online donations. This offers a cost-effective way to touch base with all your family
      and friends this holiday season while raising awareness and important funds for the TS
      Alliance.
   5. Send a thank you note to everyone who donates so they will donate again next year!


Tips for Success

Try to include a photo with your letter. This is very effective because a photo will help to put a face
with the cause.

Write about your personal experience with this disorder. Your story will encourage the recipient to
donate and help raise awareness about TS.

Don’t be afraid to request a donation! Additionally, you may want to suggest several monetary
increments to encourage the recipient to give.

Be sure to include a self-addressed return envelope to make it easy for the recipient to send you a
donation. You will love checking the mailbox every day to see how much money you have raised.

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.

After collecting all of your donations, send them to the STAMP OUT Tuberous Sclerosis
campaign’s bank lockbox, no later than June 21, 2002, to be eligible for the grand prize. A grand
prize will be awarded to the top fundraiser.


     Letter-writing campaigns can raise as much as $1,000, $5,000, $10,000 and $20,000.

                                                    3
Letter Written by a Mother




April 20, 2011


Dear Friend,

It had been a quiet morning when the call came from school. "It is Megan," the nurse calmly stated.
"Megan had a seizure while on an outing with her class," the nurse continued. "It seemed to last
forever." Even though her teachers had been briefed on tuberous sclerosis (TS) and had all the
literature on hand, it was frightening not only for them, but also for all the children witnessing a
seizure for the first time. Of course, their concern for Megan was obvious.

Megan, age 7, is our youngest of two lovely daughters. She has had seizures since the age of two
months, controlled until fairly recently with medication. You would think by now we would all be
able to deal with TS and all that goes along with it. Yet, I immediately found myself on the
telephone with the Tuberous Sclerosis Alliance for help and support. Then the unsettling thought
occurred to me, "What if there was no TS Alliance? What if I did not have the TS Alliance to rely on
for help and support? What if I had no extended family to reassure and guide me? Where would I
go, who would I call?

A lack of understanding about TS by the majority of health care professionals leads to a helpless
feeling that we are alone in this constant battle for the health care of our loved ones with TS. I truly
consider the TS Alliance 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 May is Tuberous Sclerosis Awareness Month. Mothers, like
me across the country, are joining forces to send letters requesting a donation on behalf of the TS
Alliance. Imagine the difference we can make by asking everyone we know for a donation. Please
consider making a donation for whatever amount you can afford. Any donation, whether it is $1 or
$100 will be appreciated. Please make the check payable to the Tuberous Sclerosis Alliance and
send it back to me in the enclosed self-addressed stamped envelope. I am going to mail all of my
collected donations to my friends at the TS Alliance.

Thank you for supporting me and the other mothers who have children affected by TS. Your
donation is the best Mother's Day present I could ever hope to receive.

Much love,




                                                   4
Letter Written by a Child




May 1, 2011



To All My Friends:

I am three and half years old and I have an illness called tuberous sclerosis (TS). No one really
knows why I have this illness and there is no cure. That makes mommy and daddy and the rest
of the family very sad. I have a lot of different problems because of TS, but the worst are the
seizures I have everyday.

I have different types of seizures. I can have them any time of day or night. Sometimes they
wake me in the middle of the night and I get so scared that I scream, 'cause I don't know what's
happening to me or where I am. The doctors have tried so many medicines, but some only work
for a little while, some don't work at all, and most make me feel worse than the seizures do. I get
tired or dizzy or so uncomfortable that I just don't know what to do.

I know mommy and daddy worry all the time, but really I'm just like any other kid. I love to
laugh and play, climb and run. I really love Elmo and Blue's Clues. What I really want more
than anything is a cure for tuberous sclerosis. That's why I am sending you this letter.

In honor of Mother's Day and Tuberous Sclerosis Awareness Month, I am writing everyone I
know to ask for a donation on behalf of the Tuberous Sclerosis Alliance. Raising money to
fund research programs and family support services is the best gift I could give my mom. Please
consider helping me by making a donation to the Tuberous Sclerosis Alliance.

Thank you for helping me!



P.S. All checks are tax-deductible! Please make checks payable to the Tuberous Sclerosis
Alliance and send back to me in the enclosed self-addressed stamped envelope. Once I receive all
my donations, I am going to mail them to the Tuberous Sclerosis Alliance. I can't wait to see
how much money I raise!


Will you send a donation of:

$25.00           $50.00            $100.00           $200.00           Other
                                                 5
Letter Written by a Grandmother




May 5, 2011


Dear Friends and Family,

During the month of May, people across the country are writing letters in an effort to help Stamp
Out Tuberous Sclerosis. Stamp Out Tuberous Sclerosis is a national letter-writing campaign that is
uniting people who are affected by tuberous sclerosis to raise money and awareness for this
disorder. You may be wondering why you are receiving a letter about tuberous sclerosis (TS).
Unfortunately, you have a connection to TWO people who have this terrible disorder, and their
names are Abigail and Amelia. They are my granddaughters.

Everyday, two children are born with tuberous sclerosis. There are more than 50,000 people in the
United States with TS and more than one million worldwide. Nevertheless, TS is considered rare and
there is no cure. TS is the leading genetic cause of epilepsy and the second leading genetic cause
for autism. TS individuals can also suffer from attention deficit disorder (ADD), bi-polar disorder and
obsessive-compulsive disorder. Most doctors and nurses have only read about TS and have never
encountered a patient with this disorder.

Abigail and Amelia's futures are uncertain. TS can affect every major organ in their tiny bodies.
Right now, in addition to brain tumors, they both have heart tumors. At this point they do not appear
to have optic nerve involvement, however by the time the girls turn five, they will most likely (with an
80%-90% chance) have started developing disfiguring tumors on their face. By the time the girls
turn 10, we should begin to see (with an 80% chance) cysts and tumors beginning to grow in their
kidneys. After 10 to 20 years of tumor growth, when the girls reach their 20's and 30's, the
condition of their kidney's will most likely be critical and possible even life-threatening. Given the
fact that they are female, when the girls reach their 40's and 50's, they will have a greater chance
of developing a progressive lung disorder referred to as LAM that eventually requires lung
transplantation. You can see why I am concerned for their future.

I will never lose hope that with more research, science will help us to intervene with the likely
progression of the disorder. Please join me in fighting tuberous sclerosis my making a donation to
the Tuberous Sclerosis Alliance. Parents, grandparents and supporters of the TS Alliance are writing
letters during the month of May to request donations and raise awareness for tuberous sclerosis. I
know that together we can make a difference.

Thank you for your support. If you have any questions about tuberous sclerosis, please let me know.

Very Truly Yours,
Abigail and Amelia's Grandmother




                                                   6
Letter Written By a Second Year Participant




May 1, 2011



Dear Friends and Family,

I am writing to you again this May for the Second Annual Stamp Out Tuberous Sclerosis letter-
writing campaign. Last year, I participated in this campaign to help raise awareness and vital funds
for the Tuberous Sclerosis Alliance (TS Alliance). I must admit that I was completely overwhelmed
with the generosity and support that I received from my friends, family and community. Your
generosity enabled me to raise more than $2,000 and nationally the campaign raised more than
$260,000.

In my effort to provide continual support to the Tuberous Sclerosis Alliance, I am inviting you to join
me again this year in my quest to fight tuberous sclerosis. Many of you know that this year has
been tough on our precious Davis. He is now 4 years old and enjoying going to school every day.
He is responding very well to his teachers. A few months ago, he suffered a grand mal seizure in
his sleep. Fortunately, I stay with him every night as he sleeps better when I am with him.
Because I was in the room with him, I was able to call 911 and have him transferred to a hospital
immediately. He has fully recovered and is doing very well. We are so lucky that he is with us
today!

Your contribution and continued support means a great deal to me and the TS Alliance. The TS
Alliance is the only national voluntary health organization dedicated to serving those affected with
TS. I can’t imagine what it would be like if there was not a toll-free number for families and
individuals to call for support and guidance. Additionally, the TS Alliance is funding innovative
research programs that will provide for improved treatments and ultimately a cure for tuberous
sclerosis.

 Please join me again this year by making a contribution. Please make the check payable to the
Tuberous Sclerosis Alliance and send it back to me in the enclosed self-addressed stamped
envelope.

Thank you for your support. Your donation is best Mother’s Day present I could ever receive.


Much love,




                                                   7
                    SAMPLE DONATION FORM
                TO INCLUDE WITH YOUR LETTER

Yes! I want to help STAMP OUT Tuberous Sclerosis by making a contribution of:

_____ $25.00

_____ $50.00

_____ $67.00 (in honor of my recent birthday)

_____ $75.00

_____ $100.00 (for the number of letters I sent out)

_____ $500.00

_____ $1,000.00

_____ $ _____ Other (Don't give until it hurts. Give until it feels good.)



Please mail this form and your donation back to me at:

       Your Name
       Your Street Address
       Your City, Your ST and Your ZIP

Or use the enclosed self-addressed stamped envelope.

I am collecting all STAMP OUT Tuberous Sclerosis donations and mailing them to the
Tuberous Sclerosis Alliance.




                                                   8
                           THANK-YOU POSTCARD

Below is a sample of the thank-you postcard that was designed to serve as a show of appreciation
and receipt for donors. The card provides space for you to enter the donor's contribution and to
personally sign.

Please note that the Tuberous Sclerosis Alliance is a registered 501(c)(3) nonprofit charitable
organization. Contributions to the Tuberous Sclerosis Alliance are tax-deductible to the fullest
extent allowed by the law.

A few postcards have been included in this packet, but please call (800) 225-6872 or e-mail
thoffman@tsalliance.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 post card.




                                                  9
         PARTICIPANT MAIL-IN DONATION FORM


Name _________________________________________________________________________

Address: _______________________________________________________________________

City/State/Zip: ___________________________________________________________________

Home Phone: _____________________________ Work Phone: __________________________

# of Checks included in this envelope: __________

Total Donations included in this envelope: $__________

Are you expecting to receive any more donations?

No_______ Yes_______

If yes, please indicate how much money you plan to turn in: $______________


Please mail this form to:

       STAMP OUT Tuberous Sclerosis
       Tuberous Sclerosis Alliance
       P.O. Box 10426
       Uniondale, NY 11555




                                              10