Tell The World About Marfan Syndrome: A GUIDE TO ... Table...Tell The World About Marfan Syndrome: A...

Tell The World About Marfan Syndrome:

A GUIDE TO PLANNING AN AWARENESS TABLE

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Raising awareness of Marfan syndrome and related disorders

The Marfan Foundation A Guide to Planning An Awareness Table | 1

INTRODUCTION

A key part of our mission is to create an informed public and educated medicalcommunity.

Raising awareness is vital for several reasons, most urgently because peoplewho have Marfan syndrome but do not know it may not get the medical carethey need—especially in life-threatening situations like an aortic dissection. Themore people who know about Marfan syndrome and related disorders, both inthe medical community and the general public, the more likely people who haveit will receive a proper diagnosis, and proper medical care.

It is also important to help people who are unaffected by Marfan syndrome bemore sensitive to the needs of those who are. Common physical features of Marfan syndrome, such as being very tall or needing eyeglasses at a young age,can provoke unkind remarks or behavior from others, especially among children.

Awareness of Marfan syndrome is also essential in settings where people whohave Marfan syndrome may require special accommodations, like a school orplace of business. For example, people with Marfan syndrome should not carryheavy objects, something an employer may need to understand.

The most powerful way we can raise awareness is through you—our volunteers.You are the best messengers. You have the reach, the knowledge, and the commitment to helping people with Marfan syndrome and related disorders.

If you are looking for a way to help raise awareness of Marfan syndrome in yourcommunity, an Awareness Table is a great way to do it. This guide walks youthrough the steps to set up your own Awareness Table and tells you how wecan help.

If you have any questions along the way, contact us at:[email protected] or 800-8-Marfan ext. 138.

THANK YOU—We cannot achieve our mission without you!

An estimated

200,000 people

have Marfan

syndrome or a

related disorder;

half of them have

not been diagnosed

and are at risk of a

sudden early death.


STEPS TO SUCCESS

Location Ideas:

1. Health Fair

2. Hospital

3. Library

4. Schools (K-12)

5. Colleges & Universities

6. Office Building

7. Mall/Shopping Center

8. Movie Theater

9. House of Worship

10. Fraternal Organizations

11. Health Club

12. Park

13. Sporting Events

14. Post Office

15. Main Street

16. Train Station

17. Street Fair

18. Drugstore

19. City or Town Hall

20. Turkey Trot

Where do you have a connection?

1. Choose a locationThe most important thing to look for in a location is numbers of people. Hereare some tips:

• Choose a location where some type of event is occurring that will attract anaudience. Of course this is related to scheduling, which is addressed furtherbelow. Examples include health fairs, sporting events, and craft sales.

• Choose a location that a lot of people visit regularly, such as schools, libraries,and health clubs.

2. Get permissionAlmost any location requires you to get permission. To do this, you need toidentify a contact person at your location or with the event.

Next, call or email this person and explain to them that you would like to set upa table to raise awareness about Marfan syndrome and related disorders. Tellthem that you are a volunteer for The Marfan Foundation, a nonprofit organization.

If your location is event-based, ask them if you can set up an Awareness Tableat the event. If your location is not event-based, ask them if you can set up anAwareness Table and discuss an appropriate date and time. In either case, findout if there is anything specific you need to do to obtain permission, like completean application or get a permit.

3. Schedule a date and timeIf your location is not event-based, decide when to set up your Awareness Table.If your location is event-based but the event takes place over several days ormore than a few hours, you may want to narrow down the days and times foryour Awareness Table.

It is important to work with your contact person for the location (or event) to setthe date and time. Besides giving you permission, they may be able to advise youon when the best times are: what month, or day of the week, or time of day, themost people will be there.


We can help you find volunteers. If you needmore volunteers, pleasecontact us [email protected]

We can help publicize yourAwareness Table, includingproviding help with writinga press release and postingon social media. Contact usat [email protected]

4. Publicize your Awareness TableYou’ve got a place, you’ve got a time, you’ve got permission... now you needpublicity! Hopefully there will already be plenty of people at your location, butthe more, the better. Here are three ways to help spread the word:

• OnlinePost on Facebook, tweet, email everyone you know. Tell them what you’redoing, when and where, and don’t forget the why—tell people how importantit is to you to raise awareness about Marfan syndrome and related disorders.

• News OutletsWrite a (short!) press release and send it to local newspapers and newsletters,including publications put out by schools, colleges, clubs, and religious organizations. You can also send it to local online news outlets like Patch.com.

• FlyersPrint flyers and ask every business, store and organization you can think ofto post one. Schools, libraries, hospitals, grocery stores, nail salons... if theyhave a window or a bulletin board, it can’t hurt to ask!

5. Recruit helpersMake raising awareness more fun and more effective by having a team of volunteers available to help set up the table, staff it, and clean up afterwards. Ifyou are staffing the table for only a couple of hours, one or two friends or fam-ily members may do the trick. If it’s an all-day affair or will last a few days, youprobably want a small team of people to help you.

Have at least two or three people present at all times to staff your AwarenessTable. Depending on how long it runs, you may want to schedule them in shiftsof two or three hours each. Try to get people who are friendly and outgoing—part of their “job,” after all, is to talk to strangers. Contact us for our key messages,which you can share with your volunteers.

If you’re recruiting volunteers who aren’t familiar with Marfan syndrome, be sureto take a little time before you set up your table to give them a Marfan syndrome101 lesson. You don’t need to turn them into experts, just give them some basicinformation so they can explain to other people why they are there.

Use the Awareness Table Volunteers chart in this guide to record your volunteers’names, contact information, and when they have agreed to help.

What’s in the TableKit?

• Balloons

• Flyers

• Brochures

• Pens

• Bookmarks

• Give-a-ways

To get your TableKit, contact us [email protected] or800-8-MARFAN ext. 138.


6. Final PreparationsFollowing are the last things you will need to do in advance of your AwarenessTable:

• Order our TableKitOur TableKit contains lots of items to make an Awareness Table successful,from attention-getting balloons to flyers and brochures. See the sidebar onthis page for details.

• Table & chairsWe couldn’t fit a table or chairs in the Tablekit, so you will need to makesure both are available. Ask your location (or event) contact person if theycan provide them. If not, we recommend a 5’ or 6’ rectangular table (likethe folding tables sold at office supply stores) so you have enough room todisplay all your materials.

• Other suppliesPack a bag or box with additional supplies that may come in handy at yourtable. Tape, a trash bag, water, snacks—anything you might need on the bigday.

• Arrange transportationMake sure that you and all of your volunteers have the means to get to thelocation on time. You may need to help some people arrange for rides. Alsoensure that you have the necessary transportation and help for all suppliesyou are bringing, especially if you have to provide your own table andchairs.

• Inflate balloonsYou can blow up the balloons the old-fashioned way, or you can get helpfrom a machine. Check with local florists, party supply stores, or other re-tail stores if they have an machine to inflate balloons and ask if they canhelp you.

• Plan for picturesBring a camera and ask all of your volunteers to bring theirs (or smartphoneswith cameras) so you can get lots of photographs of your table in action.See our Volunteer Photography Guidelines on page 8.

• Confirm volunteersCheck in with all of your helpers before the big day to confirm their partici-pation and review schedules.

Use the Planning Checklist in this guide to ensure you’ve got everything you need.


7. Raise awareness!Now it’s time to get out there and help teach the world about Marfan syndromeand related disorders. Here are some tips for making it a success:

• Arrive early. Make sure you have enough time to set up your table so youare ready at the scheduled start time. Check with your contact person onhow early you can get there.

• Make your table look full, but neat. Display as much material as you can,but try to keep it from looking disorganized. Add more materials if peopleare taking a lot with them, and tidy up if it starts to look messy.

• Be friendly! Welcome people to your table and thank them for their interest.Tell them what you are doing and ask if they have specific questions. Imagineyourself as the host at a party and they are your guests.

• Take lots of pictures. The best photographs are of people, so try to getpictures of volunteers at the table as well as talking to people, handing outflyers, etc. Refer to the Volunteer Photography Guidelines in this guide foradditional suggestions, and when the event is over, send your photos to usat [email protected] so we can share your activities with the Marfancommunity!

• Clean up. When it’s time to go, be sure you clean up, take your leftoversupplies, and properly dispose of trash.

• Thank everybody, including your location (or event) contact person, yourvolunteers, and anybody else who was helpful. End the activity so everybodyfeels good about it.

The number one thing to remember is why you are doing this. Do you haveMarfan syndrome or a related disorder? Is somebody you love affected? Whydo you feel it is important to raise awareness so that more people know aboutit? Share this with the people who come to your table—they won’t care unlessthey understand why you do.


PLANNING CHECKLIST

Logistics

Location name:

Location address:

Location contact name:

Contact’s phone:

Contact’s email:

Table date(s):

Table time(s):

Volunteers

Use the Awareness Table Volunteers chart to list who will be helping you, theircontact information, and the date(s) and time(s) they will be at the AwarenessTable.

Tasks

o Table & chairs secured

o TableKit ordered

o Supplies purchased

o Balloons inflated

o Volunteers prepped and confirmed

o Transportation of volunteers arranged

o Transportation of supplies arranged

Supplies

o NMF TableKit

o Table

o Chairs

o Camera

o Other:

o Other:

o Other:

o Other:

o Please send me the TableKit. I anticipate approximately ______ (number)people to visit my Awareness Table. Your best guess—so we know howmany of each item to send you.

Name:

Address:

City: State: Zip:

Home phone:

Cell phone:

Email:

Please give us a brief description of your awareness table:

Please list any other ways we can help you successfully host your Marfan syndrome Awareness Table:

To get your TableKit, pleasecomplete this form andsend it to:

Volunteer CoordinatorThe Marfan Foundation22 Manhasset AvenuePort Washington, NY 11050Fax: 516-883-8040

Or email your informationto [email protected].


TABLEKIT REQUEST FORM


Cameras (and smartphone cameras) should be set to take photographs at thehighest resolution possible. Larger photos will take up more memory but arealso more likely to be print quality.

Light is the most important factor in photo quality. Whenever possible, takephotographs outside during daylight. However, be aware of shadows and try toavoid photographs where people’s faces are deeply shaded.

The best photographs are of people. However, many people are uncomfortablehaving their picture taken and as a result may look unhappy. Try to put peopleat ease when taking their picture, and take more than one as their expressionschange.

Try to get photographs both of people looking into the camera and “actionshots,” such as a person raising their hand to ask a question or in conversationwith someone else.

Be aware of the background. For example, if you take a great picture of a per-son speaking but someone behind them is yawning, we won’t be able to use it.

Please do not crop or otherwise edit your photos. In some cases, we need photographs with extra background space, and we can make adjustments asneeded, such as lightening an image.

Before sending us your photographs, please name them in a way that will helpus identify them. For example, you could label a photograph your name, thedate, and activity or event name:

JohnSmith_July5_2013_MilwaukeeHealthFairTable.jpg.

Please be sure that any people pictured in your photographs are willing to letus use their image. Let them know that you will be sending your pictures toThe Marfan Foundation and that they may appear on our website, in ournewsletter, or in other promotional materials. Ask each person to sign the at-tached use of likeness form and submit them along with your photos. PLEASEDO NOT SEND PHOTOS OF ANYONE WHO WILL NOT AGREE AND SIGN THECONSENT FORM.

Please send photos to:[email protected]

If you have any questions,please contact us at theemail above or call 800-8-MARFAN ext. 138.

VOLUNTEER PHOTOGRAPHY GUIDELINESWe love to share your photographs with the wider Marfan community! In order to use them, however, we needthem to meet certain criteria, and we need any people pictured in them to understand that they may appear online or in print for purposes that advance the mission of The Marfan Foundation.

We hope you will allow TheMarfan Foundation to usephotos you send us in printand online to further ourmission and objectives andto celebrate your activities.If so, please have everyperson who appears in yourphotos complete this formto give us permission.

Please send completedforms with photographs to:

Volunteer CoordinatorThe Marfan Foundation22 Manhasset AvenuePort Washington, NY 11050Fax: [email protected]


USE OF LIKENESS FORM

Type of event

Location

Date(s)

I HEREBY CONSENT to use (my) (my child’s) name, picture, portrait, likeness,writings or biographical information (including if applicable, Marfan syndromeor a related disorder diagnosis), and audiotape and or videotape recordings andsound or silent motion pictures of (me) (my child) in any media for editorial,educational, promotional, and advertising purposes, for the solicitation ofcontributions, and for any other purpose in furtherance of the corporate purposesand objectives of The Marfan Foundation.

Print name of subject

Signature of subject

Home address (street, city, state, zipcode)

If subject is under 18, their parent or legal guardian must complete the following:

I affirm that I am the parent/legal guardian of and that I have full authority to decline use of his/her likeness.

Print name of parent/legal guardian

Signature of parent/legal guardian

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