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Fundraising for a Cure



Fundraising Guide!

Create a Game Plan

SO YOU WANT TO PARTICIPATE IN A MARATHON?

Participating in philanthropic sporting events should be fun, enjoyable and

rewarding. This comprehensive guidebook is intended to make your efforts as

successful as possible. 1. PICK AN EVENT

Choose an event that gives you

What you’ll find in this tool-kit… ample time to train and involve

your network.

Our goal for this guide is to provide guidance, encouragement and ideas for

your fundraising efforts. The first thing to remember is that you’re not alone.

This guide is NOT meant to replace the always available support of the ALS 2. SET YOUR GOALS

TDI staff, whose support is never more than a phone call or email away. Remember that you’re setting two goals:

a fundraising goal and a personal participation goal.

We understand that fundraising can be challenging and that there are count-

less ways to support research - thank you for choosing us, at the ALS Therapy 3. TEAM UP!

Development Institute. Talk to your friends, family, co-workers... anyone! See if people

want to join you, help you fundraise, or support you.

This guide contains all of the tips and tricks to make your effort a complete

success, from Start to Finish Line!

4. PLAN YOUR FUNDRAISING

Think about how you’d like to fundraise. There are a ton of great

ways to raise money for research.

• The ALS TDI Team

bpage Guide

• Personalized We 5. TRAIN FOR YOUR EVENT

• Comprehensive Fundraising Guide Get yourself ready for the main event. Think about how and when

& Resource List

• Training Guides you’re going to train.

ip Package

• ALS TDI Sponsorsh

• And more… 6. COMMUNICATE WITH YOUR DONORS

Always keep people engaged in what you’re doing... and why. Let

them know your story.

ADGF

DGF

DGF









7. GAME TIME!

Good luck, you’re ready!



8. RECOVER & REVIEW

Take some time off from training and see how you did. What

fy

would you do differently? Always be sure to thank all of your

supporters.









In the United States, walking, swimming, running, and cycling are at the top of This guide contains some great fundraising ideas and a

the list for most common exercise activities. useful training guide... Keep reading!





et 617.441.720

For more information email us at info@als.net or call us at 617.441.7200

3 4

Fundraising for a Cure



Getting Started!

2

$

• Registering is the first step and a great incentive to begin your planning.

• Start earlier by creating training and fundraising plans that will guide you

from now through the event.

• We can work with you to set 2 meaningful goals: a fundraising goal and a

Setting Goals

personal goal for the marathon. Think about a MARATHON GOAL you’d like to set for

yourself. It can be anything you’d like, consider the

If you haven’t picked an event, there are countless resources on following when setting your sights:

the internet and elsewhere to find events in your area...

• Time • Personal Bests

• The ALS TDI website, www.als.net, houses the Team TDI Network Events Page,

a great spot to search for events benefiting ALS research at ALS TDI. • Distance • Your Age Bracket

• Active.com is a great online catalog of events, it contains over 66,000 events and • Placing • A Podium Finish

listings for over 80 sports and 5,000 cities.

• You can also try www.mapmyrun.com, a great site for marathoners! • Finishing • or anything that motivates you!

• Your local recreation department, fitness center, or athletic shops (running store

or your area training club) might have great information on events near you.

For your FUNDRAISING GOAL, remember that every donation

yo

matters, every dollar helps fund the valuable research being

mat

And once you pick an event... conducted to accelerate the search for therapeutics.

To Do List:

1. REGISTER! No aamount is too great or too small, so set a target that moti-

vates you, seems realistic, and that your donors can embrace.

2. REGISTER!

3. REGISTER! $



35.00

250.00









Amyotrophic Lateral Sclerosis (ALS) is a progressive, fatal, neurodegenerative Your personalized website can t

personalized

r

rsona your donations and update a “thermometer” w

track y d with

disease that attacks motor neurons in the brain and spinal cord. There is no known your fundraising totals and goals! Check it out...

ndraising goals!

cure for ALS.



For more information email us at info@als.net or call us at 617.441.7200

5 6

Fundraising for a Cure



Set Up Your Website!

Your ALS TDI Team member can work with you to create your comprehensive, goals are and track

and customizable, web page.



Your personalized website will be a Send and receive

Send

great tool for yourself, friends and

family, and anyone who’d like to

support you! Use your site to make

fundraising simple and successful!







re!

Donate right he

have to

You don’t even

leave the page!



Describe your event in detail!

Include the time, date, place, etc. Let people check out

Include pictures, links, and your favorite

documents to download! websites!









and

Include ave messages

pictures Friends can le

your fri

ends, an of yourself, uragement.

Support dy words of enco

ers can p our training!

ost pictu

res too!



L Sell a product to raise

the UR

Create ite!

rs money for research...

for you

.als.net

provide a description and let

obRuns ls.net

www.R de.a donors add it to their

ALtitu et

www.P ope.als.n shopping cart!

www .TeamH









Your personalized website can link to training websites and your other favorite sites,

There are over 150 million personal websites in cyberspace. Set yours up today! but it can also link to other event pages within the Team TDI network. Link your page

to other events in your area... build a network, build awareness!



For more information email us at info@als.net or call us at 617.441.7200

7 8

Fundraising for a Cure





fundraising plan

6 steps to success!

We know that fundraising can be challenging, so remember two things: 1)

1. SET YOUR SIGHTS ON THE GOAL

Every contribution is important and helps to accelerate the pace of

If you haven’t alreay set a fundraising goal - now’s the time! Keep

research at ALS TDI, 2) We are here to help, please use us as a resource.

your donors in mind when you’re setting your goal, come up with a

goal that is reasonable and appropriate, but also motivating.

We always encourage fundraisers to remember the basics: start your fundrais-

ing early, have a plan, and provide your donors with as much information as

2. IDENTIFY YOUR DONORS

possible to help them feel like part of your team.

The obvious candidates are friends and family, but if you think

about all the people you have contact with, you’ll find that you can

A fundraising plan is easy to create and will pay dividends as you start the

create quite an impressive list of potential donors. Keep in mind

process. We’ve outlined the steps on the facing page, keep in mind that there are

their different backgrounds and abilities to give, but the bigger the

multiple ways to fundraise and they can all be incredibly successful.

network the more success you’ll have.



Letter Writing Campaign 3. CHOOSE HOW YOU’D LIKE TO FUNDRAISE

Remember to Host

Ho a party at a bar or restaurant Choose fundraising techniques that will be easy to execute and fun

for your donors. You can use as many, or as few as you’d like. Each

use your website to Ask

As for pledges per mile or minute can be very successful in their own ways. Check out the list on the

announce fundraising Have a yard or bake sale previous page for some great ideas.

events and your Organize a raffle or auction

4. INSPIRE YOUR DONORS... ASK, ASK, ASK!

mission to your Seek out Matching Gifts If you’re excited about supporting ALS TDI, your supporters will feed

donors! Look for sponsors off of that energy. Let people understand why you’re fundraising,

Sell a product tell them your story and they will want to be a part of your success.

Remember, they won’t give if you don’t ask.

Form a Team

5. KEEP YOUR DONORS INFORMED

Always track your fundraising progress and update your donors

on how you’re doing. Once they support your efforts, consider them

part of the team. You can use your personal website to keep everyone

in the loop. Send email updates with pictures and fundraising

totals, post messages on your website, make sure everyone has the

link to your page!



6. SEND THANK YOUS!

Always recognize the good will and support of your donors.

Personalized, hand-written thank-you notes are excellent and go a

long way toward showing your appreciation. It’s also fun to include

a recap of the event you participated in, including your results, and

the total money that you raised for research.





At ALS TDI:

Every minute of research costs $100

More than 86% of every dollar donated to ALS TDI goes into the lab for research.

Each viral vector costs $20,000

Each gene therapy study costs $200,000



For more information email us at info@als.net or call us at 617.441.7200

9 10

Fundraising for a Cure



sample

Letter Writing Campaign letter!

The Big Introduction. Friends & Family,

• Set the stage and get the attention of your reader. gnosed

As most of you know, Julie Everest was recently diagnosed with ALS. Julie has

• Tell your story, explain your connection to ALS. been my best friend since 1st grade ande my running partner since shortly

ing

• Tell people about the event you are participating in. thereafter. As Julie has always been a fighter, so too must we be as her friends and

• Tell them why you’re fundraising and how. family members. I’m going to commit to running this year’s Boston Marathon in

yea ’s Bosto Ma atho i

• Tell them about ALS and ALS TDI. her honor, and I hope to raise money for ALS research in the process.



ALS (Amyotrophic Lateral Sclerosis) is a progressive, fatal, neurodegenerative

Appeal to your donors emotionally and practically. disease that attacks motor neurons in the brain and spinal cord. There is no known

• Relay your experiences and those of today’s patients. cure for ALS. ALS will prevent Julie from running, the sport that we all know she

• Use language that helps convey how devastating ALS truly is. loves so much. And although this awful disease will steal her freedom, it will never

take her spirit. That is why I will run and run and run, until there is a therapeutic

• Provide hard facts and statistics to help them understand this disease. for Julie and the other 350,000 people living with ALS today.



Ask, ask, ask! I have chosen to join thousands of other supporters, from all over the world, to fuel

• If you don’t ask, they won’t give; ask directly for support. research being conducted at the ALS Therapy Development Institute (ALS TDI), in

Cambridge, Mass. ALS TDI uses entrepreneurial spirit and techniques to

• Providing suggested donations can help donors commit to giving.

aggressively seek out, develop, and deliver promising therapies to slow, arrest, and

• Remind your donor what their contribution will support. cure ALS. By identifying and filling gaps in the development process they can

- 1 minute of research, 1 hour of research, 1 gene therapy study, etc. then define and deliver resources required to transform ideas into concrete therapies.

• Provide deadlines for giving to help motivate your donors.

• Remind them that all contributions, big or small, make an important There exists no doubt in my mind how devastating ALS truly is. A team of over 30

scientists and technicians is tackling the work of overcoming this disease. ALS

difference.

TDI not only has the largest full-time team of researchers in the world working to

cure ALS, but the most experienced and interdisciplinary. This unique approach is

Be sure to thank your donors in advance! already producing results and advancing the field of study in ways never before

• Let your donors know how grateful you are for their support. thought possible.

• A simple thank you can go a long way.

Donations from passionate supporters around the world drive the Institute’s

research. The pace of research can be accelerated with your help. Please consider

Get this into your network’s hands! making a donation to ALS TDI. Your donation is 100% tax deductible and over

• Post it on your personalized website. 86% of all funds generated go directly into researching a treatment or cure. The

• Suggest that donors visit your event website. 30,000 patients living with this disease today and tomorrow need our help. Every

dollar and every donation will help ALS TDI get closer to the finish line.

• Print it out and mail it to your entire address book.

• Include a return envelope, donation form, and instructions. 26.2 miles will not be easy, but neither is living with ALS today. I hope to run the

• Email the letter to your network with a donation form attached. entire race in under 3 hours and raise over $5,000 for ALS TDI. I will keep you all

• Carry a few copies of your letter and donation form with you to hand posted on our fundraising and my training at www.run4julie.als.net. Feel free to

out in person. upload pictures of yourself and Julie, send messages, download info on my efforts

and donate to our cause easily and directly on my site. Please consider making a

ite.

donation.

What are the next steps?

• Direct them to your personalized website for more information. Thank you for joining in our fight.

• Let them know how they can donate online – and that it’s easy.

Sincerely

Christina White







Runnin

g with Ju

vacation lie on

in Verm

Winston Churchill once said, “You make a living by what you get. You make According to Giving USA, individual contributions ont

a life by what you give.” to non-profits reached nearly $200 billion in 2007.





t info@als net 617 441

For more information email us at info@als.net or call us at 617.441.7200

11 12

Fundraising for a Cure



Host a Fundraising Party!

Pick a Venue and a Date

• Contact local restaurants or bars to find a venue that will host your party. Join Me...

• The venue can decide whether you should use a cover charge, or a percent-

age of drink sales, to help your fundraising efforts. Buy From Me...

• Ask the venue to donate food or beverages to help support your cause.

• Avoid picking a date that may conflict with your network’s schedule.

• Get space donated for your event, or host it at your house.

or Match Me...

Here are some other great ideas:

Add to the Fun

• Incorporate a door prize, 50/50 raffle, live or silent auction, etc. Form a Team

• Contact local merchants to help arrange for sponsored prizes. • Enlist your friends and family to join you!

• Contact a local radio station about setting up a booth and playing music. • Fundraising as a team can increase the size of your network.

• We are happy to provide bid sheets, credit card forms, and other items to help • Pool your team’s donations and set a higher goal.

you execute an auction, raffle, or other fundraising idea. • Having teammates makes training fun and social.



Fill the Room Sell a Product

• Invite your entire network to the party, ask them to invite their network. • Use your personalized website to post a product.

• Send invitations, save-the-dates, and updates electronically. • All of the proceeds will be sent right to ALS TDI using the

• Announce the party on your personal website. helpful shopping cart feature.

• Include a save-the-date in your letter writing campaign. • Products can be donated goods. (e.g. artwork, t-shirts, bracelets,

• Suggest that donors make a donation if they cannot attend. etc.)



During the Event Matching Gifts

• Make sure to have information on your event, ALS TDI, ALS, and • Corporate matching gifts are a great way to maximize personal

anything else you think you donors might like to see. contributions and the impact of a donation. A company's

• Have donations and pledge forms on hand. matching gift may be able to double or even triple the amount of

• Make a speech, thank everyone for coming, explain again why everyone a contribution.

is there, what you’re doing, and why. Thank any sponsors or supporters. • In general, the process is as follows:

• At the end of your speech, ask again that everyone make a contribution, 1. Check with your company's human resources or payroll

no matter how small, every bit matters.

r department to see whether it offers a matching gift

program.

2. Ask for donation guidelines and check to make sure

ALS TDI is on their approved charities list. If not, ask

to fill out the appropriate paperwork.

3. Donate through the matching gift program, filling out

the appropriate forms to ensure that the match is

donated.



ALS TDI’s Finance Team will help

y’s 501(c)3 list and

ensure that TDI is on your compan

on our end, and yours!

that the paperwork is filed properly





In the United States, ALS is commonly known as Lou Gehrig’s disease because it It is estimated that there are at least 350,000 people living with ALS throughout the

took the life of the popular Yankee slugger just two years after he played his last world today; 30,000 of whom live in the United States. This year there will be 6,000

game. newly diagnosed cases in the United States alone.



For more information email us at info@als.net or call us at 617.441.7200

13 14

Fundraising for a Cure



Secure Sponsorship

Draft a letter asking for sponsorship.

• Asking for sponsorship isn’t that different from a letter writing campaign.

Extra! Extra!

• Providing information on ALS TDI and its research will help establish your cause.

• Include ALS TDI’s 501(c)3 number in your letter. Ask your ALS TDI staff

Read All About It...

member for the number. A great way to raise awareness for your event is to reach out to

• Be sure to include a specific ask in your letter. Doing so, will help you establish a your local newspaper. The more people that see what you’re doing

professional tone. the better. People you don’t even know might see your article and

• Regardless of the amount you choose, it will provide the company with a frame make a contribution on your behalf. This is a great way to get into

work to decide how they can best support you and at what financial level. the public eye at no cost!

• Provide sponsors that cannot make a financial donation an alternative option, like

a gift certificate. Draft a press release or pitch letter.

Provide Incentives! • Write a title that is exciting and as succinct as possible.

• Be sure to include the entitlements that the company will receive in return for • Like your fundraising letter, this article is intended to tell

their support. your story to an audience that doesn’t necessarily know what

• Here are a few suggestions: ALS is, or why you’re fundraising for ALS TDI.

1. Name and logo placement on your personalized webpage. • Discuss your connection to ALS and why you’ve decided to

2. Inclusions of links from your website to their’s. participate. Provide a quote to help readers identify with you.

3. Inclusion in all of your press releases and media opportunities. • Stress that you are part of the community and want to let

other members of the town know what you’re doing and that

Get your message into the company’s hands! they can help.

• If there is a manager contact them and ask to schedule • Be sure to include information about the event itself.

a brief meeting to discuss your efforts. • Be sure to include a link to your personal website

• Dropping off your letter in person can help a company

pany for those looking to donate to you directly.

put a face to your name.

Invite sponsors • Include contact information for those looking for more

• Mailing your letter can provide the ability to reach a

h to donate

large number of companies. information.

to your efforts a • Attach a picture with your article.

nd have

Take advantage of existing relationships. their company re

• Leverage relationships with local stores that you presented Distribute your release.

frequent regularly. on your Team T • The best place to start is with your local paper.

• Start with your employer!

DI

t-Shirt. • Contact the editor by phone or email and explain what you’re

• Corporations that you have a connection with doing and why you’d like to include your piece in the paper.

might be willing to support you. • Attach a copy of your letter.

• Be sure to follow up with the

editor or journalist to help ensure

e

that your article gets printed.

• In most cases, you can find the

contact info for local or area

papers online, at their respective

papers.

• Reach out to any paper you’d like,e,

501(c)3 it can never hurt to ask.







Corporate giving, including grants from corporate foundations, increased The incidence of ALS, one in one hundred thousand, is roughly equivalent to that

to $13.8 billion in 2008. of Multiple Sclerosis and five times higher than that of Huntington’s Disease.





For more information email us at info@als.net or call us at 617.441.7200

15 16

Fundraising for a Cure

Ask an ALS TDI staff member for a training

This is a suggested beginner



Marathon Training Guide

guide that better suits your level of fitness: we

have training guides for beginner, intermediate, training schedule. It assumes

you have been running for

and advanced runners.

at least 6-10 weeks and

can run for 30 minutes

Coolrunning.com says it quite well, “befitting it’s Greek roots, the

Training

without stopping.

marathon unfolds as a unique drama, carrying equal doses of

comedy and tragedy, euphoria and agony.” Revived during the

1896 Athens Olympics, the marathon had, until recently,

remained a sport for elite athletes or running fanatics. But in the

Schedule (in miles)

last two decades marathons have become a part of the average

runner’s life, as both a phyical challenge and a vehicle for chari-

table efforts.



Marathon training can vary

from one program to the next, but

they all have one thing in

common: miles and miles and

miles! The best training guides

are those that will train and

condition your body to be

prepared for the strain and stress

of an endurance event. 26.2

miles is an excellent goal - use the

following guide to help get you on

your way.









Your mileage should gradually increase each week. The

longest run you’ll do during your training is between 18-20

miles. Having completed a 20-mile run should give you a

great deal of confidence on marathon day. We suggest

tapering off the mileage in the final weeks leading up to

the marathon. This will allow your body to recover from

training to be your strongest on marathon day.





Running can be an excellent method of increasing aerobic/cardiorespiratory fitness The world record time for the marathon is 2 hours 3 minutes and 59 seconds, set in

as well as muscular endurance. Always warm-up and stretch before running to the Berlin Marathon by Haile Gebrselassie of Ethiopia on September 28, 2008.

improve performance and prevent injuries.



For more information email us at info@als.net or call us at 617.441.7200

17 18

Fundraising for a Cure



Marathon Training Guide

Listed below are the basics. Successful marathon training is about

staying motivated, staying safe and healthy, and staying focused!

Keep a Running Journal

Keeping a personal journal of your runs can help you track

Equipment your progress, avoid past mistakes and inspire you to

The experts suggest investing in a good pair of running shoes. Your sneakers strive to new heights. Your journal can be as simple as a few

will be the most important piece of equipment you have. Running shoes are very dashed notes on the distance and time you ran each day or

diverse and have been designed to fit feet with different arches, pronation, and you can keep track of the details of your route, the way you

more. We suggest that you visit your local running store to find the best shoes

feel, and what kind of a paces you used throughout your

for you.

run.

Nutrition Some great running resources:

Carbohydrates provide the fuel runners need. Coolrunning.com reports that

during marathon training, 65% of your total calories should come from carbohy- Running Clubs Always feel comfortable

drates, 10% should come from protein, and 20-25% of your total calories should Running Stores asking an expert if you

come from unsaturated fats. Always remember to get the nutrients your body Runner’s World Magazine

needs. Eating right will keep your energy levels up and allow your body to have a question during

adequately recover from workouts. www.coolrunning.com training.

www.mapmyrun.com

Recovery www.runningnetwork.com

Recovery is as important as the hard work you’ll put in logging those miles. Your

training guide has built in rest days, you should not be running every day. Your

body needs to rest between runs so it can recover from one day to the next. Be

sure to take recovery days as seriously as your running days because that’s

when you get stronger!



Stay Hydrated

On runs of an hour or more consider carrying fluids with you. If not be sure to

plan your running route so that you can consume 6-8 oz. every 20 minutes (use

water fountains, convenient stores, etc.). A great way to manage your hydration

level is to weigh yourself before and after each run and get your body weight

back to your starting weight by drinking water or a sports drink after your run.

Marathon Day!

Remember to taper in the weeks leading up to your mara-

Avoiding Injury thon, this will help your body recover from training and

Use your non-running days to rest and recover! If you have any soreness in your ensure that you’re strongest on the big day. Also consider

joints or shins make sure to ice those areas down. Common injuries include carbo-loading the week leading up to the race. Don’t get

knee pain and soreness in the shins. The key to training for, and finishing, a

marathon is staying healthy and training hard. overly excited at the starting line, marathons are about

endurance and pace is critical. Maintain your pace

throughout the event and save something for your big

finish!







The “marathon” is named after the fabled run of the Greek soldier Pheidippides, a

In 2007, there were one billion pairs of running shoes sold worldwide.

messenger from the Battle of Marathon to Athens.





For more information email us at info@als.net or call us at 617.441.7200

19 20

Fundraising for a Cure



ASSIGNED TO:

You

MISSION: Fundraise for a Cure Alicia Favicchio

Event & Program Manager

Derek Breau

Northeast Regional Director

Driving4Life Director





Joining Team TDI

The Team TDI Network is a community of ALS patients, their

families and communities dedicated to funding research at ALS

Email: afavicchio@als.net

TDI. The TeamTDI program brings together ALS patients and Phone: 617.441.7209 Email: dbreau@als.net

Phone: 617.441.7224

friends who have chosen to join forces with ALS TDI to find effec-

tive treatments for ALS patients today. Vanessa Plant Amy Whipple

Event & Program Manager Midwest Regional Director





Faced with this devastating disease, many families and friends of

ALS patients take positive action by raising money to fund ALS

TDI research.

Email: vplant@als.net Email: awhipple@als.net

Phone: 617.441.7230

This is Our Lab, Make it Your Lab. Phone: 617.441.7257



A world-class scientific research center, built by and for ALS

Lou Kobbs Jo Tanzer

patients, ALS TDI is a nonprofit biotechnology company that Southeast Regional Director Southwest Regional Director

combines the proven methods and best practices used in industry

with the passion of a nonprofit mission. Amyotrophic Lateral Scle-

rosis (ALS) is a progressive, fatal, neurodegenerative disease that

attacks motor neurons in the brain and spinal cord. There is no

Email: lkobbs@als.net

known cure for ALS. Our research team is executing the largest Phone: 617.441.7262

Email: jtanzer@als.net

Phone: 617.441.7222

discovery biology and drug development project possible today to

combat ALS.

MEET THE TEAM!

Mike Shannon

West Regional Director



It is the mission of ALS TDI to use entrepreneurial spirit and Do you want to get

involved? Do you have

techniques to aggressively seek out, develop, and deliver promising

a question?

therapies to slow, arrest and cure ALS. We are driven by a single,

profoundly important goal – to discover viable treatments for ALS Email: mshannon@als.net Contact us anytime!

as quickly as possible. Phone: 617.441.7258









ALS has no prejudice. It occurs without regard to age, ethnic, economic, or Since 2001, the ALS TDI scientific team has grown from 11 to 33 members, including 9

geographic boundaries. with advanced degrees (Ph.D. / M.D).





For more information email us at info@als.net or call us at 617.441.7200


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