ACTION TOOLKIT
© Jeffrey Bruno/Aleteia (CC BY-SA 4.0)
A SIMPLE GUIDE TO HELP YOU SHARE, ADVOCATE
AND ENGAGE TO MAKE A DIFFERENCE FOR THOSE
AFFECTED BY HUNTINGTON’S DISEASE
1
Dear HD advocates,
In preparation for Pope Francis’ Special Audience
for the HD community in solidarity with South America
on May 18th, we want as many people as possible to
know about the plight of those affected by HD and their
families and to mobilize action to end the stigma and
shame around the disease.
Your help is critical to bring HD out into the open and improve the
lives of families affected by the disease.
Together we can achieve more for the HD community, and that is why
we’ve created this kit to help you spread the word in your own
communities.
This kit includes:
1. Simple key messages to reference and use when speaking or writing
about the issue and event
2. Sample letters/e-mails for your local government and religious leaders,
as well as other relevant community organizations
3. A media alert to inform local press, as well as tips for working with
media
4. Supporting content to bring your message to life, including an HD fact
sheet, infographics, videos and photos
5. Sample social media posts
In addition to what is already in this kit, we will be providing new content via
our newsletter, website and social channels, so please stay tuned. Thank
you for your dedication and support.
It’s time for Huntington’s Disease to be Hidden No More!
- The HDdennomore team
2
Find us on…
HDdennomore.com
@HDdennomore
/HDdennomore
HDdennomore Channel
3
1. KEY MESSAGES
These messages include key information about HD and
the event to help you communicate consistently and
effectively when writing or speaking about the issue and
the upcoming gathering.
4
KEY MESSAGES
1. Huntington Disease (HD) is an incurable genetic brain disorder affecting nearly one
million people globally. It is among the most common hereditary brain disorders, yet
few people know about it and no cure exists.
•
•
HD causes the progressive breakdown of nerve cells in the brain, deteriorating a
person’s physical and mental abilities.
It begins with personality changes and progresses to loss of body function, eventually
robbing the person of the ability to talk, walk, swallow, think and reason.
2. Stigma around HD has forced those affected by the disease to hide in shame for
generations, hindering the availability of services to improve their daily lives.
•
•
People with symptomatic HD have uncontrolled, irregular, rapid, jerky movements, called
chorea, cognitive challenges such as loss of speed and flexibility in thinking and memory
loss, and psychiatric disorders including depression and anxiety.
These symptoms have forced families affected by HD to hide in shame for fear of public
criticism, discrimination and unfair treatment. They feel alone, marginalized and rejected.
3. For the first time ever on May 18, Pope Francis will recognize the devastating plight of
those living with and affected by HD. He will host what is expected to be the world’s
largest gathering of the HD community to drive awareness of HD and to lift the stigma
around the disease.
•
•
•
The global gathering was inspired by the plight of HD families from around the world,
including South America where disease prevalence is 100 to 1,000 times higher than in
other places in the world.
Families from Colombia, Venezuela and Argentina will travel to meet with Pope Francis
and join an audience of thousands HD advocates and supporters.
The historic event is being led by a global coalition of HD advocates, called
HDdennomore (‘Oculta Nunca Más’ in Spanish and ‘Mai Più Nascosta’ in Italian). The
leaders of this effort were instrumental in bringing this issue to Pope Francis.
4. Action is needed now to reverse the stigma and improve the lives of people affected
by HD. By working together, we can raise awareness, increase understanding and
mobilize action to ensure that HD is Hidden No More.
5. Be a part of history. Visit hddennomore.com to register for the event and other
opportunities to get involved.
5
2. SAMPLE LETTERS/EMAILS
These letters/emails can be distributed to local
government representatives, religious leaders and other
local organizations to bring their attention to Huntington’s
disease, the plight of those affected, and/or encourage
them to attend the event.
We encourage you to customize the letter with local
information to make it most relevant to the local
community leaders to whom you are communicating.
6
LETTER TO LOCAL GOVERNMENT AND COMMUNITY REPRESENTATIVES
(SOUTH AMERICA FOCUS)
“People often say that, as a mother, there’s nothing more heartbreaking than hearing that your
child is sick. Dilia knows this tragedy all too well: four of her children and one grandchild have
already passed away from HD, four more are living with HD and several grandchildren have
started showing symptoms.” Watch her story here.
Dear [INSERT NAME],
I am writing to make you are of and encourage your participation in what is expected to
be the world’s largest gathering of the Huntington’s disease (HD) community to date.
On May 18, 2017, Pope Francis will become the first pope to recognize HD.
On this historic day, an audience of thousands will join Dilia’s family and 4 others from South
America (specifically Colombia, Venezuela and Argentina) – where prevalence of the disease is
among the world’s highest – to help drive awareness of HD and to lift the stigma around the
disease.
An estimated one million people are affected by this fatal genetic disorder that has no cure.
HD begins with personality changes and progresses to loss of body function, eventually robbing
the person of the ability to talk, walk, swallow, think and reason. Its symptoms have forced those
affected to hide the disease for fear of public criticism, discrimination and unfair treatment.
[INSERT INFORMATION ABOUT LOCAL IMPACT OF HD IF AVAILABLE OR STORY OF
LOCAL PERSON OR FAMILY AFFECTED BY HD].
There are no treatments to slow the progression of the disease and limited options for managing
symptoms. The disease continues unabated globally.
Your help is critical to improve the lives of those affected by HD in our community. How
can you help?
•
•
•
•
Attend the event on May 18th (please register at hddennomore.com/register/)
Let your constituents or members know about the event
Utilize social media (or other methods available to you) to share important information about
HD and the plight of families living with the condition (you may find content for sharing on
our website and social channels listed below)
Sign up to receive the HDdennomore newsletter on Hddennomore.com
Every action counts. We hope that you will join me to reverse the stigma and improve the
lives of people affected by HD.
Thank you in advance for your support. It’s time for Huntington’s Disease to be Hidden No More!
Best Regards,
[INSERT NAME]
HDdennomore.com | Facebook: /Hddennomore | Twitter: @hddennomore | YouTube:
HDdennomore channel
7
LETTER TO LOCAL GOVERNMENT AND COMMUNITY REPRESENTATIVES
(GENERAL COMMUNITY FOCUS)
“People often say that, as a mother, there’s nothing more heartbreaking than hearing that your
child is sick. Dilia knows this tragedy all too well: four of her children and one grandchild have
already passed away from HD, four more are living with HD and several grandchildren have
started showing symptoms.” Watch her story here.
Dear [INSERT NAME],
I am writing to make you are of and encourage your participation in what is expected to
be the world’s largest gathering of the Huntington’s disease (HD) community to date.
On May 18, 2017, Pope Francis will become the first pope to recognize HD.
On this historic day, an audience of thousands will join Dilia’s family and many others from
around the world to help drive awareness of HD and to lift the stigma around the disease.
An estimated one million people are affected by this fatal genetic disorder that has no cure.
HD begins with personality changes and progresses to loss of body function, eventually robbing
the person of the ability to talk, walk, swallow, think and reason. Its symptoms have forced those
affected to hide the disease for fear of public criticism, discrimination and unfair treatment.
[INSERT INFORMATION ABOUT LOCAL IMPACT OF HD IF AVAILABLE OR STORY OF
LOCAL PERSON OR FAMILY AFFECTED BY HD].
There are no treatments to slow the progression of the disease and limited options for managing
symptoms. The disease continues unabated globally.
Your help is critical to improve the lives of those affected by HD in our community. How
can you help?
•
•
•
•
Attend the event on May 18th (please register at hddennomore.com/register/)
Let your constituents or members know about the event
Utilize social media (or other methods available to you) to share important information about
HD and the plight of families living with the condition (you may find content for sharing on
our website and social channels listed below)
Sign up to receive the HDdennomore newsletter on Hddennomore.com
Every action counts. We hope that you will join me to reverse the stigma and improve the
lives of people affected by HD.
Thank you in advance for your support. It’s time for Huntington’s Disease to be Hidden No More!
Best Regards,
[INSERT NAME]
HDdennomore.com | Facebook: /Hddennomore | Twitter: @hddennomore | YouTube:
HDdennomore channel
8
LETTER TO RELIGIOUS LEADERS
“People often say that, as a mother, there’s nothing more heartbreaking than hearing that your
child is sick. Dilia knows this tragedy all too well: four of her children and one grandchild have
already passed away from HD, four more are living with HD and several grandchildren have
started showing symptoms.” Watch her story here.
Dear [INSERT NAME],
I am writing to make you are of and encourage your participation in what is expected to
be the world’s largest gathering of the Huntington’s disease (HD) community to date.
On May 18, 2017, Pope Francis will become the first pope to recognize HD. As a powerful
voice for Catholics and believers of every faith, his recognition of the disease will send a
message of hope to those affected by HD, and encourage all faiths to come together for this
critical cause.
On this historic day, an audience of thousands will join Dilia’s family and many others from
around the world, including several from South America (specifically Colombia, Venezuela and
Argentina) where prevalence of the disease is among the world’s highest, to help drive
awareness of HD and to lift the stigma around the disease.
An estimated one million people are affected by this fatal genetic disorder that has no cure.
HD begins with personality changes and progresses to loss of body function, eventually robbing
the person of the ability to talk, walk, swallow, think and reason. Its symptoms have forced those
affected to hide the disease for fear of public criticism, discrimination and unfair treatment.
[INSERT INFORMATION ABOUT LOCAL IMPACT OF HD IF AVAILABLE OR STORY OF
LOCAL PERSON OR FAMILY AFFECTED BY HD]
There are no treatments to slow the progression of the disease and limited options for managing
symptoms. The disease continues unabated globally.
Your help is critical to improve the lives of those affected by HD in our community. How
can you help?
• Attend the event on May 18th (please register at hddennomore.com/register/)
• Let your constituents or members know about the event
• Utilize social media (or other methods available to you) to share important information about
HD and the plight of families living with the condition (you may find content for sharing on
our website or social channels listed below)
• Sign up to receive the HDdennomore newsletter on Hddennomore.com
Every action counts. We hope that you will join me to reverse the stigma and improve the
lives of people affected by HD.
Thank you in advance for your support. It’s time for Huntington’s Disease to be Hidden No More!
Best Regards,
[INSERT NAME]
Hddennomore.com | Facebook: /Hddennomore | Twitter: @hddennomore | YouTube:
HDdennomore channel
9
3. MEDIA ALERT AND TIPS
Local media can be a helpful tool to educate the
community about HD. You may share the media alert
included in this kit with your local newspapers, television
and radio stations.
IMPORTANT: Should you receive any media inquiries as
a result of your outreach, please forward those inquiries to
[email protected] immediately. We
encourage you not to answer any media questions
directly. Our media team will be responsible for answering
media questions and arranging any interview request.
10
MEDIA ALERT
POPE FRANCIS TO MEET WITH THE GLOBAL HUNTINGTON’S COMMUNITY TO SHINE
A LIGHT ON AND LIFT STIGMA OF DISEASE
WHAT:
Pope Francis’ special audience with the Huntington’s Disease community in
solidarity with South America
WHEN:
Thursday, May 18, 2017 at 10 a.m. CEST (doors open at 8 a.m. CEST)
WHERE:
Aula Paolo VI (Sala Nervi), Vatican City, Rome
Pope Francis will be the first pope to recognize Huntington’s disease (HD) and welcome what
is expected to be the world’s largest gathering of the HD community to the Vatican.
The global gathering was inspired by the plight of families from South America – where
prevalence of the disease is among the world’s highest. Families from Colombia, Venezuela
and Argentina will travel to meet with Pope Francis and join an international audience of
thousands affected by HD at the Vatican to drive awareness and lift the stigma around the
disease.
Huntington’s disease is an incurable genetic brain disorder affecting nearly one million people
globally. It has no cure. The disease deteriorates a person’s physical and mental abilities often
during their prime working years. The symptoms of HD, including involuntary movements as well
as cognitive and psychiatric challenges, have forced many of those affected to hide the disease
for fear of public criticism, discrimination and unfair treatment.
Through the participation of families living in Venezuela’s Lake Maracaibo, the huntingtin gene
was identified nearly 25 years ago, helping catalyze critical research and interventions to
improve the lives of those affected by HD. Yet few treatments exist and the disease continues
unabated globally.
The event is part of HDdennomore – pronounced ‘Hidden No More’ (Oculta Nunca Más’ in
Spanish and ‘Mai Più Nascosta’ in Italian) – a global initiative of HD patient advocates.
Media Opportunities:
1. Pre-event interview opportunities: Researchers, physicians and patients of the
HDdennomore coalition closely connected to and responsible for organizing the meeting
with Pope Francis.
2. On-site media roundtable with families from South America and HD advocates: A media
roundtable will be held on May 17 in advance of the gathering. Details to follow.
3. Event: The event will be open to media. Pre-accreditation and event registration required
per Vatican protocol. Please see details below.
MEDIA CONTACT: For media inquiries, and to register for the event, contact:
[email protected]
11
MEDIA TIPS
•
Make it easy. It is best to reach out to local media via email. Your email should include a
short 2-3 sentence introductory note explaining why you are reaching out to them, as well as
the media alert (pg. 11) copied and pasted within the body of the email (not attached).
•
Target your pitch. Look for a journalist who has previously covered Huntington’s disease or
health in general as they are more likely to be interested in the story. You can do so by
searching relevant key terms on the media outlets website. If you are not able to find their
email address, visit their website for a general editorial email address, or contact their
editorial desk via phone.
•
Find a local angle. Are you part of a local HD or HD-related organization? Are you
personally affected by HD or know someone who is? Are you planning to join us on May 18?
Include this information in your outreach to your local media. A few ways to do so are
included below:
o
o
o
•
Change headline of media alert. For example:
 Local HD organization goes to the Vatican on May 18 to join what is expected
to be the world’s largest gathering of the HD community
Make your role clear in your introductory email. For example:
 My name is Emma Smith and I am the Director of the HD group in Toronto
and I am writing to make you are of…
Integrate local stats in your media pitch. For example:
 There are more than 100 families in our community that are affected by HD.
Make the story visual and provide extras. Help them enhance the story by providing
helpful links to photos, videos, graphics and fact sheets. You can direct them to the below
locations for this information:
o
o
o
o
Hddennomore.com
Facebook.com/ HDdennomore
Twitter.com/HDdennomore
YouTube: HDdennomore channel
12
4. CONTENT
Photos, videos and graphics for you to share as part of our
outreach to local community leaders, media or within your
own social channels
IMPORTANT: We will be providing new content every
week via our newsletter, website, and social channels so
please stay tuned to these platforms.
13
INVITATIONS
Download our invitations to
print, share and email.
English
Español
Italiano
VIDEOS
You can find all our videos on
our HDdennomore You Tube
Channel, including several
videos detailing the journey of
the 5 South American families
affected by HD who will make
the journey to Rome on May
18.
GRAPHICS
You can view or share directly
any of our HD graphics via our
website. You can also save
each graphic to attach in an
email by right clicking on the
graphic and select ‘save
image as.’
HD FACT SHEET
Click here to download the HD fact sheet.
14
5. SOCIAL POSTS
Suggested Facebook posts, tweets and more to help you
get the word out
15
Remember to always use the hashtag #HDdennomore in every social post related
to this initiative so that others may track the conversation.
KEY POINTS TO
SHARE ABOUT
SUGGESTED POSTS
MEDIA
You are invited
Be a part of history. Sign up today
to join the global #HD community
and Pope Francis in Rome this 18
May! #HDdennomore
Invitation (see pg. 14)
Register for the
event
Only a few more weeks until Pope
Francis meets with the global
Huntington’s community. Have
you registered yet?
http://bit.ly/2oesZEe
#HDdennomore
HDdennomore.com/register
Sign up for the
newsletter
Have you seen the
#HDdennomore newsletter? Sign
up for event updates, shareable
infographics and more!
http://bit.ly/2prqLlz
HDdennomore.com/getinvolved/#subscribe
Meet the #HD families from South
America traveling to meet with
Pope Francis on May 18
#HDdennomore
http://bit.ly/2osGIUb
Multiple videos available on
the HDdennomore YouTube
Channel
Learn the facts. Pass them on.
Help shine a light on Huntington’s
disease #HDdennomore
HD fact sheet or
infographics available on
HDdennomore.com
Visit the #HDdennomore website
for the latest event updates
http://bit.ly/2ozMCXC
HDdennomore.com
Meet the families
going to Rome
Learn about HD
Visit our website
16