Mitochondrial Disease
Awareness Ideas Kit
A guide on how
you can help
increase
awareness
about Mito
Thank you for helping to raise awareness about Mito!
Introduction
Every year during the third week
of September, patients, families,
and friends from around the world
galvanize their efforts as one for
Mitochondrial Disease Awareness
Week. But there are opportunities
all year round to raise awareness.
Every holiday, every season
presents a chance to take
advantage of all the resources
that are available to you.
MitoAction invites you to celebrate and honor the lives of every child,
adult, and family who struggles with the devastating diagnosis of Mito
by participating in or hosting an awareness event. For more ideas,
visit http://www.mitoaction.org/awareness.
About Mitochondrial Disease
Mitochondrial disease is an inherited chronic illness that causes
debilitating physical, developmental, and mental disabilities. Anyone is
vulnerable; you can be born with it or it can develop later in life. It’s
progressive and there is no cure. About 1 in 2,000 people in the
United States has mitochondrial disease. Mito symptoms differ from
person to person and can first appear in infants, children, teens, or
adults. Common symptoms include poor growth, loss of muscle
coordination, muscle weakness and pain, seizures, vision and/or
hearing loss, gastrointestinal issues, learning disabilities, and heart,
liver, or kidney failure. Mito is also related to autism, diabetes,
Alzheimer’s, and Parkinson’s.
About MitoAction
MitoAction, a Boston-based 501(c)(3) charity incorporated in 2005 (tax
ID 55-0899427), is dedicated to empowering patients and families
with mitochondrial disease through support, education, and advocacy
programs. We believe help today is just as important as research for a
cure tomorrow.
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What you can do!
We have many ways for you to raise awareness about mitochondrial
disease!
Table of Contents
Host a Restaurant Charity Night .......... Page 4
Host a Mito Patient & Family Social ..... Page 5
Send your paper this press release ..... Page 6
Hand out this Mito Fact Sheet .............. Page 7
Plan an awareness walk ........................ Page 8
Light A Light for Mito ............................. Page 9
Fundraising & awareness ideas ........... Page 10
Awareness materials
MitoAction can send you materials to have on hand at your event.
We offer awareness postcards, MitoAction brochures, tattoos,
bumper stickers, the g-tube book, “When Jeremy Jones’ Stomach
Stopped Working,” and the six-video DVD that features such titles as
“Energy 4 Education,” “This is My Mito,” and “Living With
Mitochondrial Disease.” Please email Ginger at
[email protected] for materials.
A book for Mito families
MitoAction Executive Director Cristy Balcells has penned the musthave resource for Mito families, “Living Well with Mitochondrial
Disease: A Handbook for Patients, Parents, and Families.” The book
is available at Amazon.com and Woodbine House.
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Raise awareness & funds at a charity night
Spreading awareness about mitochondrial disease doesn’t always have to be
done in a classroom or medical office setting. It can begin with efforts by you
in everyday settings!
Eat, Drink, Be Merry ... Spread awareness and raise funds for MitoAction!
Host an awareness night at a restaurant. Many restaurants will offer “charity
nights” in which they will donate a percentage of all sales on that specific
date to a charity!
Here is a small list of restaurants that currently offer this type of program (not all locations offer
the same programs):
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AppleBee’s
Friendly’s
Flatbread Pizza
Ninety Nine
Not Your Average Joe’s
Wendy’s
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McDonald’s
Culver’s
Sweet Tomatoes
Fuddruckers
Sonic Drive-In
California Pizza Kitchen
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Moe’s Southwest Grill
Buffalo Wild Wings
Jersey Mike's Subs
Max & Erma's
Call or stop in and ask the manager today how to set up your own awareness and charity event.
If you are working with a restaurant that has multiple locations, see if you can get all the
locations in your area to host one on the same night!
Here are some tips on making your restaurant awareness event a success.
Once you have selected an easily accessible and well-known location in your area, promote
your event! Some restaurants will give you flyers and stickers to hand out, some will have you
do your own. Make sure you get it out to the public. Hand out flyers at school sporting events,
hang posters in grocery stores, churches, doctors offices, etc.
Use e-mail, Facebook ... you get the picture. Get the word out to everyone.
Get volunteers to help you the day of the event. Have volunteers greeting people as they enter
the restaurant. Hand out flyers to everyone who comes through the door so you are spreading
awareness to people who simply have shown up for a good meal! Ask the manager what you
can and cannot do, and always be respectful of the servers. Ask them to help you spread the
word, too!
Need help? Contact us at [email protected] to help get you started!
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Mito Socials bring people together
We have heard many people express their desire to meet other Mito families in their
communities. We want to help you make those connections. We are seeking volunteers
to help organize a Mito Patient and Family Social in your area and MitoAction will help!
These gatherings are low-key, relaxed events that allow Mito families to meet each
other, share stories, give and get support, and realize they’re not alone on this difficult
journey.
We’ve held several Socials so far and they
have been hugely successful.
As a Social host, you will be responsible for
finding a site (we can help), arranging a
date and time, and doing setup the day of
the event.
MitoAction will send out the email
invitations, manage the RSVPs, and
provide materials and a small stipend for
snacks.
Kids attending the Mito Social in the Atlanta area
have a great time!
We want to help you get support closer to home, and are hopeful that a Mito Social will
offer just that. MitoAction’s mission is to improve the quality of life for everyone affected
by mitochondrial disease through support, education, outreach, and advocacy initiatives.
We believe in supporting and empowering our Mito community today.
If you’d like to organize a Social, or want more information, please contact Ginger
DeShaney, MitoAction’s Membership and Support Coordinator, at
[email protected].
Thank you!
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PRESS RELEASE
For immediate release
Contact: Cristy Balcells, Executive Director
[email protected]
1-888-648-6228
MitoAction raises awareness about mitochondrial disease
Six-year-old Benjamin has mitochondrial disease. His energy factories are broken; it’s as if his
batteries are running low. Just being in a noisy place or skipping a snack can drain his energy for
the whole day. This is just one face of Mito.
Mitochondrial disease is an inherited chronic illness that causes debilitating physical,
developmental, and mental disabilities. Anyone is vulnerable; you can be born with it or it can
develop later in life. It’s progressive and there is no cure. About 1 in 2,000 people in the United
States has mitochondrial disease.
MitoAction, a nonprofit organization whose mission includes providing support to Mito patients and
their families, invites you to celebrate and honor the lives of every child, adult, and family who
struggles with the devastating diagnosis of mitochondrial disease.
Mito symptoms differ from person to person and can first appear in infants, children, teens, or adults.
Common symptoms include poor growth, loss of muscle coordination, muscle weakness and pain,
seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or
kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, and Parkinson’s. Mito may be
underdiagnosed until improvements in diagnosis and awareness occur. Today there is no cure for
mitochondrial disease; treatment is focused on energy conservation and vitamin therapy.
MitoAction is a dedicated support and empowerment organization for patients and caregivers
affected by mitochondrial disease. It believes help today for Mito patients and families is just as
important as research for a cure tomorrow.
MitoAction’s mission includes: improving quality of life for children and adults affected by the
disease; raising awareness about mitochondrial disorders and their relationship to other diseases;
providing specific and practical materials that help patients manage their symptoms; aggregating
and connecting the international mitochondrial disease community; creating tools that empower
patients and caregivers to be advocates for themselves or their children.
Join MitoAction in its mission to raise awareness of this disabling disease. Learn more at
www.MitoAction.org.
MitoAction is a 501(c)(3) charity formally incorporated in 2005 to provide programs and resources centered on support,
education, and advocacy for patients and families affected by mitochondrial disease.
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Mitochondrial Disease Fact Sheet
Who is MitoAction?
MitoAction is a Boston-based 501(c)(3) charity incorporated in 2005 (tax ID 55-0899427) that is
dedicated to empowering patients and families living with mitochondrial disease through free
support, education, and advocacy programs. We believe help today is just as important as
research for a cure tomorrow. Visit our website: www.mitoaction.org.
What is mitochondrial disease?
Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell
fail to produce enough energy for cell or organ function. Mitochondria are responsible for creating
more than 90% of the energy needed by the body to sustain life and support growth. When they
fail, less and less energy is generated within the cell. Whole systems begin to fail, and life is
severely compromised.
How common are mitochondrial diseases?
Estimates suggest that 1 in 2,000 people will face a diagnosis of mitochondrial disease.
Mitochondrial dysfunction has also been implicated in autism, diabetes, Parkinson’s disease, and
Alzheimer’s disease.
What are the symptoms of mitochondrial disease?
Mito commonly manifests with devastating symptoms such as stroke, muscle pain, extreme fatigue,
and organ failure. Depending on how severe the mitochondrial disease is, the illness can range in
severity from mild to fatal.
How are mitochondrial diseases diagnosed and treated?
There is no single laboratory or diagnostic test that confirms a diagnosis of mitochondrial disease.
Blood DNA and/or muscle biopsies are the best means of diagnosing patients.
Is there a cure for mitochondrial disease?
There are no cures, but treatment can help reduce symptoms, or delay or prevent the progression
of the disease. Researchers internationally are working hard to better understand mitochondrial
disease.
What is MitoAction’s mission?
• To improve quality of life for children and adults affected by the disease.
• To raise awareness about mitochondrial disorders, and their relationship to other diseases.
• To provide specific and practical materials that help patients manage their symptoms.
• To aggregate and connect the international mitochondrial disease community.
• To engage the pharmaceutical industry working toward therapeutic approaches to
mitochondrial disorders.
• To create tools that empower patients and caregivers to be advocates for themselves or their
children.
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For more information, please email Susan at [email protected].
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Light A Light for Mito
For the angels we miss so dearly,
we light a light and remember you.
Each year during the Wednesday of the third week of September,
as we celebrate and join together to raise awareness for
mitochondrial disease across the globe, we remember those who
have lost the battle with mitochondrial disease and ask that friends
and family "Light a Light" in their memory. Please send your photos and memory wishes to us at
[email protected]
http://www.mitoaction.org/light-light-mito
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Fundraising & awareness ideas
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Bake Sales - Consider hosting a bake sale at your child's school or sporting event during
awareness week. Along with the goodies for sale, consider displaying more information about
mitochondrial diseases and MitoAction's programs.
Car Wash - High school age supporters may want to host a car wash, donating the proceeds
to support MitoAction's mission. You will want to arrange to use a parking lot (with access to
plenty of hoses) for an afternoon. You'll also want to publicize the event in advance, both by
word of mouth and by posting fliers. On the day of, set up signs to direct drivers to your event.
Classrooms for a Cause - Many schools (or even individual teachers) are receptive to hosting
a special assembly discussing the science behind mitochondrial diseases. Your school might
be willing to host a "pennies for energy" campaign or a bake sale in connection with such an
assembly, too.
Community Service Projects - Many schools have community service requirements, and older
Boy and Girl Scouts may be looking for Eagle or Silver awards projects. We would be happy to
work with interested youth to develop a service project targeted at helping those afflicted by
mitochondrial diseases.
Donations for a Day - Local merchants may be amenable to helping by donating a portion of
their revenues for a day (or even a few hours) to MitoAction. Let us know if you have arranged
a "donations for a day" program with a local merchant and we can help publicize your event.
Garage Sale - Why not host a garage sale to sell those "household extras," then donate your
proceeds to MitoAction? Your neighbors can participate by donating their used children's
clothing, furniture, etc., to your sale. Your children may want to help by running a bake sale or
lemonade stand at the same time.
Get Energized - Ask your local YMCA or gym if they'd host a cycle-a-thon to support
MitoAction. Supporters can sign up to ride a stationary bike or swim for 30 minutes or an hour,
making a donation to MitoAction. The gym may let you hang fliers in advance to recruit riders.
On the day of your event, you can hang a poster and have brochures available to educate
your community about mitochondrial diseases. We can help with both.
Goals for MitoAction - Local sports teams (of all levels) may consider making a pledge to
donate $100 (or some other amount) each time they score a goal or hit a home run. Your child
could ask his or her teammates if each would like to donate a dollar when their team scores a
goal or ten dollars if their team wins a game.
Host a Coffee Break - You can raise awareness of mitochondrial diseases and fundraise at the
same time. Ask your local coffee shop if it would cohost an awareness afternoon, donating a
percentage of beverage revenues to MitoAction. We can provide brochures and other
publicity materials to share with patrons; you also may want to collect checks.
Host a Wine Party - Why not invite your friends and neighbors for a wine and cheese party? If
wine and cheese are not your thing, you could offer your choice of food and beverages. This is
a great way to educate and fundraise at the same time.
Penny Drive - Ask your child and his or her friends to collect their spare change for a good
cause. Or, you can take this fundraising idea a step further, and ask a local merchant to place a
donation box beside its cash register to encourage customers to donate their spare change.
For more ideas: http://www.mitoaction.org/fundraising-ideas
For more information: [email protected]
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