Energy for Life Walkathon
Team Captain Toolkit
© 2010 United Mitochondrial Disease Foundation
Last Updated July 2015
Table of Contents
STEP BY STEP GUIDE TO BEING A TEAM LEADER _________________________________________ 3
STEP ONE: GET SIGNED UP! _______________________________________________________________
STEP TWO: BUILD YOUR TEAM! _____________________________________________________________
STEP THREE: USE YOUR NETWORK! __________________________________________________________
STEP FOUR: THINK FUNDRAISING! ___________________________________________________________
STEP FIVE: USE THAT NETWORK! ____________________________________________________________
STEP SIX: BUILD TEAM SPIRIT! ______________________________________________________________
STEP SEVEN: ROUNDING THE BEND __________________________________________________________
STEP EIGHT: THE HOME STRETCH! ___________________________________________________________
STEP NINE: YOU ARE PART OF THE CURE! ______________________________________________________
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SAMPLE RECRUITMENT EMAILS (THESE ARE JUST A FEW – FIND MORE AT MY HQ) _____________ 6
EMAIL ONE: SUBJECT: HELP US FIND A CURE FOR MITOCHONDRIAL DISEASE! ____________________________
EMAIL TWO: SUBJECT: LET’S MAKE A DIFFERENCE! ______________________________________________
EMAIL THREE: SUBJECT: MITOCHONDRIAL DYSFUNCTION LINKS _____________________________________
EMAIL FIVE: SUBJECT: THANK YOU FOR DONATING! _____________________________________________
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FUNDRAISING IDEAS _______________________________________________________________ 8
50 WAYS TO FUNDRAISE _________________________________________________________________
COINS FOR A CURE______________________________________________________________________
ENERGY FOR LIFE LIGHTBULB CAMPAIGN _______________________________________________________
BINGO CARD__________________________________________________________________________
HOW TO RAISE $200 IN 5 DAYS ____________________________________________________________
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FREQUENTLY ASKED QUESTIONS _____________________________________________________ 9
WHAT IS MITOCHONDRIAL DISEASE? __________________________________________________________ 9
HOW DOES MITOCHONDRIAL DISEASE AFFECT THE BODY? ____________________________________________ 9
WHAT SYMPTOMS COULD AN UNDIAGNOSED INDIVIDUAL EXHIBIT? _____________________________________ 9
WHAT IS THE PROGNOSIS FOR THESE INDIVIDUALS? ________________________________________________ 9
WHEN IS SOMEONE WITH MITOCHONDRIAL DISEASE AT THE HIGHEST RISK? ________________________________ 9
HOW MANY INDIVIDUALS ARE AFFECTED? ______________________________________________________ 9
WHAT IS THE UNITED MITOCHONDRIAL DISEASE FOUNDATION (UMDF)? _______________________________ 10
HOW DOES UMDF SUPPORT RESEARCH TO FIND A CURE? __________________________________________ 10
HOW CAN I REACH UMDF FOR MORE INFORMATION? ____________________________________________ 10
Step By Step Guide to Being a Team Leader
Step One: Get Signed Up!
–
Set a goal: How many walkers do you want to recruit? How much money do you
want to raise?
–
Register your team on the walk website. Here’s how:
1.
2.
3.
–
Visit www.energyforlifewalk.org and select your city’s Energy for Life
Walk.
On the left hand side, click “Register” and choose “Start a Team.”
Login to your UMDF account if you have one. Complete the
Registration Form. This will give you future access to your Personal
Headquarters webpage.
Set up your Personal Page. Here, you can tell your story, solicit donations, and
recruit teammates.
1.
2.
3.
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Don’t forget to add a
personal touch by
uploading your own photo
and telling your story.
On the left menu bar, click on “Main Login” which will log you into “My
HQ.”.
Click on “My Webpage” to edit your personal page.
Follow the directions on the page to upload a photo and edit the text
you want to appear on your page.
As a Team Leader, you can also edit your Team Page from My HQ. Each Team
has a Team Page that shows stats, members, and a personal message helpful in
recruitment.
1.
2.
3.
On the left menu bar, click on “Main Login” which will log you into “My
HQ.
Click on “My Webpage” to edit your team page.
Follow the directions on the page to upload a photo and edit the text
you want to appear on your page.
Step Two: Build Your Team!
–
Think about your personal circle. Who would want to be on your team? Think
about people in your family, friends circle, school, work, church, neighborhood,
organizations you participate in, organizations your children participate in, and
businesses you frequent.
–
Send emails to friends and family to ask for their support using your My
Headquarters (HQ). Create your own message or use the template. The email
message will automatically include a direct link back to your personal page to
make it as easy as possible for them to make a donation or join your team.
1.
2.
3.
Click “Email Friends” under My HQ to access the email tool.
Use the Import Address Book tool, enter a quick list of email addresses
individually or click on “Address Book” in blue to see who you already
have connections with.
Customize an email template or compose a new personal message.
Use My HQ to import your
address book to spread
the word!
Step Three: Use Your Network!
–
Think of ways to get more people excited about walking for your team. Tell your
story, challenge other departments to friendly competition, or plan a meeting or
booth at a recreational or company event.
–
Hang up the Energy for Life Walk posters at your work, school, any other place
you frequent often. Add your name and telephone number so that people can
contact you to join the team.
–
Ask all of your current teammates to invite a friend to join the team!
Use e-mail, voice mail,
memos, paycheck stuffers,
bulletin boards, and word
of mouth to let everyone
know about the “ENERGY
FOR LIFE” WALK. This kit
includes some sample
emails. USE THEM!
Step Four: Think Fundraising!
–
If you haven’t yet, now’s a great time to start using your ENERGY Bingo Card!
–
Visit My HQ and click on “Reports” and see how you are doing! This is the area
to View your total donation status.
–
The Secure Donate feature ensures no personal information is shared. Online
donors will receive an instant receipt for tax purposes and a thank you note.
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As a Team Leader, you can also access a Team Donation Report
–
Think Wrap-around Events – these are a great way to have fun prior to walk day
and to bring your community together. Some great ideas are: Coins for a Cure,
Lightbulb Campaigns, Dine & Donate nights, yard sales and many more at
www.energyforlifewalk.org/50waystofundraise!
Immediately all donors
see their contributions
applied to your goal and
their name will appear on
your scrolling Honor Roll.
Step Five: Use That Network!
–
Hold a meeting to brainstorm ideas to recruit walkers & raise more money.
–
Set aside a few minutes each day to call or meet with two people who have
promised to walk. Remind them of the urgent need to collect their donations.
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The website was designed to promote competition among fundraisers. Watch
the homepage to see how you rank among fellow walkers. Monitor the progress
of teams and send out emails to inspire your team members.
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Watch your personal page to see the names of those who have made donations.
You may want to encourage them to join the fun. Or just call to say thank you.
1.
2.
To send out email messages to your donors, check the individual boxes
for each recipient.
Complete the 'Compose Email Message' section.
Run reports and send out
thank you notes showing
your appreciation. Or if
you are very close to your
goal, send out another
appeal asking friends to
give one more time!
Step Six: Build Team Spirit!
–
Plan a rally to celebrate with your team and coordinate last minute details.
Remember, word of mouth is an effective tool. Send around a memo or e-mail
about the rally and the “ENERGY FOR LIFE WALK”.
–
Send an extra copy of walk papers to each team member. Encourage them to
ask one new person - co-worker, family, or friend - to join them for the walk.
Team T-Shirts are a great
way to increase team
spirit and raise awareness!
Make sure you order
yours today from the
Energy Store at
umdfeflstore.com
Step Seven: Rounding the Bend
–
Are your key team partners helping you meet your goals? Get together and plan
one last big sweep.
–
Review all suggestions. Have you missed any? Are there any worth repeating?
Make sure your newest
teammates know how to
use their HQ page and
have a Walker Kit.
Step Eight: The Home Stretch!
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Send last minute reminders - e-mail, voicemail, memos, or flyers. Review
meeting details, especially the location of your meeting place, and remind all
walkers to bring their donation money with them the day of the walk.
–
Make copies of the directions to the “ENERGY FOR LIFE” walk.
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WALK THE WALK! Wear your team t-shirts to the Walk and have fun!
–
Bring your camera and take lots of pictures.
Remember that all
walkers must register on
their own on the day of
the race.
Step Nine: You Are Part of the Cure!
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Send an email to your teammates and thank them.
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Collect contributions not turned in at the walk and mail to the UMDF.
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Celebrate your team’s success in your company’s newsletter, church bulletin,
school bulletin, or local newspaper.
–
Send a personal Thank You note to everyone who donated to your team.
Send team photos to
[email protected]!!
Sample Recruitment Emails (these are just a few – find more at My HQ)
EMAIL ONE: SUBJECT: Help us find a cure for mitochondrial disease!
We need your help! At this time, there is no known cure for mitochondrial disease. We typically only
treat the symptoms, but there is hope and UMDF leads the way to that hope. [Our family is] [I am] a part
of the cure by participating in an Energy for Life Walkathon, and [we] [I] want you to be a part of the
cure as well!!
[We are] [I am] participating in the United Mitochondrial Disease Foundation’s Energy for Life
Walkathon because [EXPLAIN WHY YOU CHOSE TO START/JOIN A TEAM. TELL YOUR STORY!]
Our participation allows the UMDF to continue in collecting the most promising basic science that is
ready to translate to clinical application and matching it to the researcher or company poised with
resources to advance a project. The nearly $13 million in UMDF bootstrapping grant awards made
to‐date have led to hundreds of millions of dollars of follow‐on awards from larger granting agencies like
the NIH.
You can be a part of our team as well! Please mark [WALK DATE] on your calendars and click the links
below to register! That is when the walk will take place at [WALK LOCATION] in [CITY, STATE]. If you are
not able to join us, please consider making a donation in support of [our] [my] team!
Join [TEAM NAME] and have fun while helping us more one step closer to a cure. Call me at [YOUR
NUMBER] for more information on joining or donating to [TEAM NAME].
EMAIL TWO: SUBJECT: Let’s make a difference!
We need your help to make a difference for those who are living every day with the effects of
mitochondrial disease!
Did you know?
 That every 30 minutes, a child will be born who will develop mitochondrial disease by the age of
10.
 That adult onset is becoming increasingly common.
 That mitochondrial disease occurs when there is a defect in the body’s ‘powerhouses’. The
mitochondria fail to produce enough energy which results in organ systems failing.
 Just imagine a major city with half of its power plants shut down. The same thing happens in
the affected person’s body. The brain may be impaired. They may lose vision or hearing. The
heart may be weakened, and they may have eating and digestive issues.
 Mitochondrial disease is fatal and there is no cure.
We are working each day toward a cure of mitochondrial disease. You can help by joining us for the
United Mitochondrial Disease Foundation’s Energy for Life Walkathon that will be happening on [WALK
DATE] at [WALK LOCATION] in [CITY, STATE].
Become part of the cure and join (TEAM NAME), or make a donation in support of our walk team! Call
me at (Your Number) for more information on joining or donating to (TEAM NAME).
EMAIL THREE: SUBJECT: Mitochondrial Dysfunction Links
Research into mitochondrial dysfunction is supporting the link between many other common diseases
and chronic conditions associated with mitochondrial dysfunction such as:
 Alzheimer’s disease
 Parkinson’s disease
 Diabetes








Heart disease
Obesity
Autism Spectrum Disorders
Chronic Fatigue Syndrome
Seizure Disorders (Idiopathic origin)
Exercise intolerance
SIDS
Kidney disease
Because of this linkage, research into the fundamental mechanisms of mitochondria and mitochondrial
diseases due to genetic mutation will provide insights into a host of other illnesses and conditions. The
United Mitochondrial Disease Foundation is the largest private donor of funds for peer‐reviewed
research providing over $13 million in research. And is the largest non‐governmental funder of primary
mitochondrial disease research in the world.
Your support of the UMDF’s Energy for Life Walkathon, which will take place on [WALK DATE] at [WALK
LOCATION] in [CITY, STATE], will allow the Foundation to provide more dollars toward this valuable
research.
Please consider joining [Team Name] as we provide the ENERGY that is needed to sustain the LIFE of
those living with mitochondrial disease. If you are not able to join us, please consider making a
donation to our walk team!
EMAIL FIVE: SUBJECT: Thank you for Donating!
Thank you so much for supporting the annual Energy for Life Walkathon! Donations from members like
you are the reason the UMDF has funded over 13 million dollars in research throughout the years, thus,
becoming one step closer to a cure.
A resounding ‘THANK YOU’ for helping to make Team [Team name here] such a success. [TALK ABOUT
YOUR TEAM’S EXPERIENCE AT THE WALK/or if before the walk TALK ABOUT YOUR TEAM’S PLANS FOR
THE WALK]
Even though the walk is over, there are still many ways to help:
• Ask your employer if they participate in a matching gifts program. Many businesses have philanthropic
foundations or programs that match gifts. Inquiring about those programs not only supports the UMDF
financially, but also raises much-needed awareness about mitochondrial disease. For more information
please call the office at 1-888-317-8633.
• The Energy for Life Walk website is still up and running and able to collect donations. Have donations
that you forgot to bring to the walk? No worries, keep donating online! Visit
www.energyforlifewalk.org/WALKNAME to make any final donations!
Thank you again for your commitment to finding a cure & to Team [TEAM NAME],
YOUR NAME HERE
Fundraising Ideas
50 Ways to Fundraise
Find additional ways to fundraise on the UMDF website at www.umdf.org/50waystofundraise.
Some ways are quick and easy, while others are larger projects. Some highlights include:
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BABYSIT
BIRTHDAY PARTY/HOUSE PARTY
CAR WASH
CASUAL DAY
CHURCH/GROUP ANNOUNCEMENT
DINNER OR GALA
DOG WALK
GARAGE SALE
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GOOD GRADES
GUEST BARTENDING NIGHT
ICE CREAM SOCIAL
KARAOKE NIGHT
PERCENTAGE OF SALES
RAFFLES
SACRIFICE
YARD WORK
Coins for a Cure
The Coins for a Cure campaign is a great way to bring in extra donations for your walk team!
Just create a fun container to collect the coins (or email us to request a cardboard box –
[email protected]) set the box out at your school, business, office or home and watch the coins
add up!
Energy for Life Lightbulb Campaign
Utilize this great awareness builder and fundraising campaign to raise extra donations for your
team. These paper Lightbulbs can be sold at community stores, in classrooms or offices for
$1.00 each. You can request a pack of Lightbulbs by emailing [email protected].
Bingo Card
You will be provided with a reusable fundraising bingo card. Use the star stickers to cover the
dollar amounts. They range from $1.00 to $5.00. Walk up to a relative, friend, coworker, or
stranger and ask if they’d like to play Energy Bingo. Explain that they’ll select a sticker to
remove and underneath will be a dollar amount ranging from $1.00 to $5.00. Their donation
will be whatever dollar amount is revealed. Remember, when your card is all used, add a new
set of stickers and start over!!
How to Raise $200 in 5 Days
Day 1: Donate $25 yourself.
Day 2: Ask your housemate/spouse/partner to donate $25.
Day 3: Ask two relatives to donate $25 each.
Day 4: Ask two friends to donate $25 each.
Day 5: Ask two neighbors to donate $25.
$ 25
$ 50
$100
$150
$200
Frequently Asked Questions
What is mitochondrial disease?
Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy
the body needs to function. In a person with mitochondrial disease, the mitochondria are failing
and cannot adequately convert food and oxygen into life sustaining energy. For many,
mitochondrial disease is an inherited genetic condition, while for others the body's
mitochondria can be affected by environmental factors.
How does mitochondrial disease affect the body?
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs,
are the most affected by mitochondrial disease. The affected individual may have strokes,
seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea),
swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle
failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver
disease.
What symptoms could an undiagnosed individual exhibit?
The child or adult may have seizures, severe vomiting, failure to thrive, heat/cold intolerance,
muscle weakness, delayed achievement of milestones, sever diarrhea/constipation, feeding
problems, unable to fight typical childhood infections or repeated infections and fevers without
a known origin. A "red flag" for mitochondrial disease is when a child or adult has more than 3
organ systems with problems or when a "typical" disease exhibits atypical qualities.
What is the prognosis for these individuals?
Currently, there are no treatments for children and adults with mitochondrial disease.
Although some of the affected children and adults are living fairly normal lives with the disease,
many people are severely affected, and many children do not survive their teenage years. More
research dollars are needed to find more effective treatments and ultimately a cure for
mitochondrial diseases.
When is someone with mitochondrial disease at the highest risk?
The child or adult is at highest risk for neurological and organ damage during and for the two
weeks following an illness. Therefore even a simple flu or cold virus can have devastating
effects on the patient, even death. Any illness must be treated immediately with medical
interventions, like IV fluids and IV antibiotics.
How many individuals are affected?
Every 30 minutes, a child is born with mitochondrial disease. While exact numbers of children
and adults suffering from mitochondrial diseases are hard to determine because it is a difficult
disease to diagnose because it affects every person differently. In fact, science has linked
mitochondrial dysfunction with major diseases like Alzheimer’s, Parkinson’s, diabetes, autism
and even the aging process itself.
What is the United Mitochondrial Disease Foundation (UMDF)?
The UMDF was created in 1996 by parents of affected children. The UMDF exists to promote
research and education for the diagnosis, treatment and cure of mitochondrial disorders and to
provide support to affected individuals and families. The UMDF is about coordination,
communication and collaboration in our communities. Coordinating our efforts and resources,
communicating our needs and abilities and forming collaborations to bring information,
patients, medical professionals and resources together to enhance progress for treatment and
cures.
How does UMDF support research to find a cure?
As the largest non-governmental funder of mitochondrial disease research, UMDF has already
achieved tremendous success in marshalling resources for new research and improving
awareness and understanding of mitochondrial disease. In the last decade, UMDF and its
Scientific Advisory Board of experts have awarded an unparalleled $11 million in grants to the
most promising mitochondrial disease research proposals—leading to a range of invaluable
new breakthroughs. The UMDF's scientific and medical advisory board is composed of
mitochondrial disease experts from around the world, and these experts select which research
grants receive funding. The UMDF is considered the premier foundation for mitochondrial
disease by the world medical community.
How can I reach UMDF for more information?
To speak to someone at UMDF’s national office, please call 1-888-317-UMDF (8633) or email
[email protected]. You can also find abundant information on our website – www.umdf.org.
Mail in your donations to:
United Mitochondrial Disease Foundation
Attn: Energy for Life Walkathon: YOUR CITY HERE
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239