1 Jeffrey Bruno/Aleteia (CC BY-SA 4.0)
In preparation for Pope Francis Special Audience for the HD community in solidarity with South America on May 18 th, 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
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 aware 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 18 th (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 aware 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 18 th (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 aware 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 18 th (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 HDdennomoremedia@gmail.com 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: WHEN: WHERE: Pope Francis special audience with the Huntington s Disease community in solidarity with South America Thursday, May 18, 2017 at 10 a.m. CEST (doors open at 8 a.m. CEST) 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: HDdennomoremedia@gmail.com 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 families going to Rome 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 about HD 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 our website Visit the #HDdennomore website for the latest event updates http://bit.ly/2ozmcxc HDdennomore.com 16