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MARFAN AWARENESS MONTHSPREAD THE WORD THIS FEBRUARY USING
SOCIAL MEDIAProjectGuide
Raising awareness of Marfan syndrome and related disorders
The Marfan Foundation Marfan Awareness Month Social Media Project Guide | 1
INTRODUCTION
Awareness of Marfan syndrome and related disorders leads to early diagnosis,treatment, and an extended lifespan. The most powerful way we can raiseawareness is through you, our volunteers. Your circles of relatives, friends,co-workers, and neighbors, your knowledge, your personal journey, andyour commitment cannot be matched by anyone outside of our community.
February is Marfan Awareness Month and you can do your part from thecomfort of your own home with this Marfan Awareness Month Social Mediaproject guide. In addition to sharing information from our Facebook page,Twitter feed, and YouTube Channel, you can create your own status updates,tweets, and posts to increase Marfan awareness. This guide walks you throughsteps to raise awareness among your online friends using social media.
And if you are using any of our other project guides to create fundraising andawareness events, use social media to promote your efforts. And rememberto post them on our Facebook page and direct them to us on Twitter too.
Questions?Contact [email protected]
1. If you have a Facebook profile, make sure you “like” The Marfan Foundationpage at https://www.facebook.com/NationalMarfanFoundation so thatour status updates appear in your news feed.
2. Comment and share our status updates, pictures, and videos, especiallyduring Marfan Awareness Month.
3. Watch for the special Marfan Awareness Month profile picture and coverphotos on February 1. When you see them, make them your profile pictureand cover photo, too, to increase awareness among your Facebookfriends and to create unity with the Marfan community. Here’s what towatch for:
Cover photo: Profile photo:
4. Create your own Facebook posts to educate your personal networksabout Marfan syndrome. Use our hashtag #MarfanAwareness in all yourposts for easy tracking. Tell your story, explain why #MarfanAwareness isimportant to you, and promote Marfan facts. Encourage your Facebookfriends to share your posts to multiply your impact.
5. Post photos and share what you’re doing for Marfan Awareness Monthon our Facebook page.
6. If you are not on Facebook, now is a good time to join! Create a profile(for free) on facebook.com. Then “friend” people you know (friends, relatives, neighbors) to create your personal network before Februarybegins. Then, when you post about #MarfanAwareness, you will be sharing information with a large, and growing, group of people.
The Marfan Foundation Marfan Awareness Month Social Media Project Guide | 2
Sample Facebook Posts
It’s #MarfanAwarness Month.
An estimated 200,000 people
in the U.S. have Marfan or a
related disorder. About half don’t
know it. Do you know the signs?
http://bit.ly/1chwIFh
Are you Marfan aware? Its
#MarfanAwareness Month.
Learn the basic facts.
http://bit.ly/18DywYv
February is #MarfanAwareness
Month! Learn what it is!
http://bit.ly/1c8apjJ
People with #Marfan syndrome
can live a normal lifespan IF they
are diagnosed and treated. It’s
#MarfanAwareness Month, so
please learn the signs!
http://bit.ly/1chwIFh
Do you know what Marfan
syndrome looks like? The
outward signs could indicate a
life-threatening problem that
you can’t see. Find out more,
including how to get evaluated,
during February, which is
#MarfanAwareness Month.
Marfan.org has all the info!
1. If you have a Twitter handle, make sure you follow us @NMF_Marfan.
2. Watch for our tweets, favorite them, and retweet them to your followers.
3. Create your own tweets about Marfan syndrome to educate your followers.Use our hashtag #MarfanAwareness in all your tweets for easy tracking.Tell your story, explain why #MarfanAwareness is important to you, andpromote Marfan facts. Encourage your followers to retweet your tweetsto multiply your impact.
4. If you are not on Twitter, now is a good time to join! Create your twitter handle (for free) on twitter.com. Then follow people you know and thosewho you want to influence. There’s a good chance that people you followwill then follow you back. That’s the power of Twitter. Then, when youtweet about #MarfanAwareness, you will be sharing information with alarge, and growing, group of people who will, hopefully, retweet yournews to their followers.
The Marfan Foundation Marfan Awareness Month Social Media Project Guide | 3
Sample Tweets
February is #MarfanAwareness
Month. Learn about #Marfan at
Marfan.org
#Marfan syndrome and
#MarfanAwareness are very
important to me. Please visit
Marfan.org and #NMF_Marfan
to learn more.
I’m supporting #MarfanAwareness
because #Marfan is in my family.
Find out what it is at Marfan.org.
There is beauty in #Marfan
syndrome. Hear Tony Award-winner
Ann Reinking talk about it:
http://bit.ly/Rnvqye
It’s #MarfanAwareness Month!
Check out the faces of #Marfan
syndrome:
http://bit.ly/Rnsemi
#MarfanAwareness Month is a
good time to learn the signs of
#Marfan. Check them out here:
http://bit.ly/1chwIFh
Approx. 200,000 in the U.S. have
#Marfan or a related disorder; half
don’t know it. Know the signs.
http://bit.ly/1chwIFh
The Marfan Foundation Marfan Awareness Month Social Media Project Guide | 4
Examples
How and when should I talk to my
child about Marfan syndrome?
http://bit.ly/Kq7Uzv
What is the outlook for patients
with Marfan syndrome?
http://bit.ly/1a7QMbc
How much weight can I lift if I have
Marfan syndrome?
http://bit.ly/1awd5UD
How has the Marfan diagnosis
affected your family? Teens provide
their responses.
http://bit.ly/1cPAB35
How do you decide to tell people
that you have Marfan syndrome?
The teen perspective.
http://bit.ly/Kq3Mim
Why are most kids with Marfan
syndrome tall and why do they
wear glasses?
http://bit.ly/1kiHKyx
YOUTUBEHave you seen our YouTube Channel? You can find us at YouTube.com bysearching for “The Marfan Foundation.” Our channel features nearly 200videos of doctors answering the most common questions about Marfan syndrome. There are also videos of people in our community talking abouttheir perspective on Marfan syndrome and some of the issues that concernthem. There are sections on medical, diagnostic, and treatment information;living with Marfan syndrome or a related disorder; videos for teens; andvideo for kids. Share the videos that mean the most to you on your socialmedia networks.
Marfan Facts
1. Marfan syndrome is a life-threatening genetic disorder. An early, accuratediagnosis is essential, not only for people with Marfan syndrome, but alsofor those with related disorders.
2. Marfan syndrome affects our connective tissue, which helps to hold thebody’s cells and tissues together. It also regulates how our bodies grow.
3. Knowing the signs of Marfan syndrome can save lives.
4. Our community of experts estimates that nearly half of the people whohave Marfan syndrome don't know it. Without proper diagnosis and treat-ment, they are at high risk for aortic dissection and sudden death.
5. Some features of Marfan syndrome are easier to see than others. These include long arms, legs, and fingers; tall and thin body type; a curved spine;sunken or protruding chest; flexible joints; flat feet; crowded teeth; and unexplained stretch marks on the skin. Harder-to-detect signs include heartproblems, especially related to the aorta, the large blood vessel that carriesblood away from the heart.
6. There are several disorders related to Marfan syndrome that cause peopleto struggle with the same or similar physical problems with their heart andblood vessels, bones and eyes, and anyone affected by these disorders alsoneeds an early and accurate diagnosis.
7. Advances in diagnoses, treatments, care, and research about Marfan syndromewill likely advance the diagnoses, treatments, care, and research about related disorders—and vice versa.
8. Marfan syndrome and related disorders can cut lives short, particularlywhen they go unchecked, and they deeply affect the quality of life of the individuals and families coping with the disorders.
9. The life-threatening part of Marfan syndrome is its effect on the aorta, thelarge blood vessel that takes blood away from the heart. In people living withMarfan, the aorta can enlarge, leading to a tear or rupture. With monitoringand treatment, this does not have to happen!
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EMAIL SIGNATURESInclude a Marfan fact of the day in your email signature during February. Here are 28 facts, one for each dayof the month. You can also post these on your Facebook page. Remember to remind people that they canalways learn more at Marfan.org.
10. If Marfan syndrome is suspected, talk to your doctor and seek an evaluation.You can get more information from The Marfan Foundation at Marfan.org.
11. Marfan syndrome and related disorders affect about 200,000 men andwomen in the U.S., regardless of race and ethnicity.
12. People with Marfan syndrome have a 50 percent chance of passing the mutation on each time they have a child.
13. People are born with Marfan syndrome, but they may not notice any featuresuntil later in life. However, Marfan syndrome features can appear at any age,including in infants and young children. Marfan syndrome features and medicalproblems can get worse as people age.
14. Marfan syndrome can affect many parts of the body, and each person is affected differently. This is called variable expression. Features can evenvary among people in the same family who have the condition.
15. Diagnosing Marfan syndrome requires a multi-system clinical exam; thatmeans an examination by a heart doctor, a bone doctor and an eye doctor.Genetic testing can sometimes be helpful.
16. Family medical history is an important consideration when seeking a Marfandiagnosis. Even if Marfan syndrome was not diagnosed, look for parents andgrandparents who died from an unexplained heart death before the age of 50.
17. Unexplained stretch marks – without significant weight change – can raise thesuspicion of Marfan syndrome.
18. When getting evaluated for Marfan syndrome, the possible outcomes are: aMarfan syndrome diagnosis, emerging Marfan syndrome, another geneticdisorder of connective tissue or no specific diagnosis. Regardless of theoutcome, medical treatment and follow-up care for the existing symptomsare critical.
19. There is no cure for Marfan syndrome. However, a range of treatment optionscan reduce and sometimes prevent complications.
20. People with Marfan syndrome should not play competitive or contact sportsbecause of the effect on the fragile aorta, as well as the pressure they puton the fragile bones and joints.
21. Eye problems associated with Marfan syndrome include early nearsighted-ness, early glaucoma, lens dislocation and retinal detachment. Treating eyeproblems early is key to maintaining quality of life.
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22. Several lung problems are associated with Marfan syndrome. These includeemphysema, asthma, and even collapsed lungs. All can greatly impact dailyliving.
23. Research is finding new ways to treat people with Marfan syndrome and related disorders. Most affected people can work, go to school, and enjoyactive hobbies.
24. With early diagnosis and appropriate management, the life expectancy forsomeone with Marfan syndrome is similar to that of the average person.
25. People with Marfan syndrome should be treated by a physician familiar with the condition and how it affects all body systems. Careful management includes an annual echocardiogram to monitor the size and function of theheart and aorta; an initial eye exam by an ophthalmologist, including a slit-lamp exam, with periodic follow up exams; careful monitoring of the skeletalsystem by an orthopedist, especially during childhood and adolescence;medications such as beta-blockers to lower blood pressure and, consequently,reduce stress on the aorta; and lifestyle adaptations to reduce stress on theaorta.
26. People with Marfan syndrome are at an up to 250 times greater risk of aorticdissection than the general population. With regular monitoring, drugtherapies and lifestyle adaptations (for example, no competitive sports),this potentially fatal complication can be avoided.
27. If you suspect that you or a family member may have Marfan syndrome or arelated disorder, the first thing to do is find a doctor who is knowledgeableabout the condition. Ideally, look for a medical geneticist, a doctor who specializes in genetic conditions such as Marfan syndrome. A second choiceis a cardiologist (heart doctor). Make sure the cardiologist has treated peoplewho have Marfan syndrome and related conditions.
28. More information about Marfan syndrome and related disorders is availablefrom The Marfan Foundation, Marfan.org or 800-8-MARFAN, ext. 126.
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