RENT - The Marfan Foundation Project Guide.pdf · of the hit Broadway show, RENT. Jonathan Larson,...

ProjectGuide

Raising awareness of Marfan syndrome and related disorders

RENTAWARENESS & FUNDRAISING

The Marfan Foundation RENT Awareness & Fundraising | 1

INTRODUCTION

It is estimated that half of the 200,000 Americans who have Marfan syndromeor a related disorder aren't even aware of it. Without a diagnosis and treatment,they are at risk of an early sudden death. That’s why it is our mission to createan informed public and educated medical community. As a volunteer, you canhelp raise awareness and, ultimately, save lives. One way is through our RENTAwareness & Fundraising Project.

The most powerful way we can raise funds and awareness is through you—ourvolunteers. You are our champions. Your circles of relatives, friends, co-workers,and neighbors, your knowledge, your personal journey, and your commitmentcannot be matched by anyone outside of our community.

This guide provides step-by-step guidelines for raising awareness of Marfansyndrome and related disorders in conjunction with an upcoming local productionof the hit Broadway show, RENT. Jonathan Larson, the creator of this award-winning musical, died suddenly of a misdiagnosed aortic dissection believed tohave been caused by Marfan syndrome. His tragic story can increase awarenessof this life-threatening genetic disorder and save others from the same fate.

This guide contains suggested activities, sample letters, a press release, and educational materials you can reproduce and share with others and describesthree ways you can take part in a RENT Awareness & Fundraising Project:

• Pre-performance publicity• Performance day awareness activity• Coordinated fundraising activity

If you have any questions along the way, contact us at [email protected] or516-883-8712, ext. 138. THANK YOU—we cannot advance our mission without you!

You can begin to generate awareness in your local media in advance of openingnight.

1. Collaborate with the show’s producer

The first step is to reach out to the producer of your local production to discusshow you’d like to use the show to raise awareness and why raising awareness forMarfan syndrome and related disorders is important to you. You may need toask for approval, particularly if you want to do anything on-site when the showis performed. Creating a partnership with the producer enables you to increasethe success of your efforts. A sample letter of introduction is included in thisproject guide.

2. Some ways you can generate awareness before the production are:

• Write a letter to the editor of your local newspaper. A sample letter to theeditor is included in this project guide.

• Email a press release to local newspapers, radio stations, and TV stations,along with a letter suggesting an article (for newspapers) or broadcast segment (for radio and TV). A sample press release is included in this projectguide, along with a sample cover note.

• Use Facebook, Twitter, and other social media to post about the upcomingproduction, about Jonathan Larson, and about Marfan syndrome. Sampleposts and tweets are included in this project guide.

• Email information about the production, and links to any media coverageyou secure, to your contacts.

• Post comments on local news or activity websites and blogs.

• Request a complimentary advertisement in the performance program topromote Marfan awareness. An advertisement you can submit is included inthis project guide.

• Work with the director, cast, and crew to amplify your message.

o Request an opportunity to address everyone involved in the productionto give a brief introduction to Marfan syndrome and related disorders.You can read them the message from Jonathan’s parents, Nan and AllanLarson, included in this project guide, and encourage them to mentionMarfan syndrome in some of their own promotional efforts.

o Schedule joint appearances with the director or cast members to talkabout Marfan syndrome at other groups' meetings, such as a school club,a chamber of commerce, or another community group. This helps promotethe production and raise awareness of Marfan syndrome.


PRE-PERFORMANCE PUBLICITY

You can also arrange for awareness activities at the theater to raise awarenessof Marfan syndrome and related disorders among theater-goers. Note that thesehave to be set up ahead of time, but they take place on the day(s) of the per-formance. You may need to work with the producer of the show, the managerof the theater, or both.

1. Set up an awareness table at the performance venue

Ask some volunteers (your friends and family members) to help set up, staff,and take down a table in the lobby or other well-trafficked area.

Offer information about Marfan syndrome and its connection to RENT. Requestour Event Kit, which contains several items to make your awareness table moresuccessful, from attention-getting balloons to flyers and brochures.

2. Program inserts

If you were not able to get approval for a complimentary advertisement in theperformance program, seek permission to include a program insert in everyprogram. You can use the ad included in this project guide.

3. Address the audience

Seek permission to address the audience at intermission or at the end of theshow. Alternatively, ask if a cast member can do it. This “curtain call speech” isan opportunity to talk about Jonathan Larson and Marfan syndrome, and whyit’s so important to know the signs of the condition. A sample curtain callspeech is included in this project guide.


PERFORMANCE DAY AWARENESS ACTIVITY

You can add a fundraising element to your RENT activities and raise not onlyawareness, but also critical funds to help the Foundation better serve the Marfansyndrome and related disorders community. Setting a lofty, but achievable,fundraising goal significantly enhances your success. You can always increaseyour goal if you reach it right away.

1. Choose a fundraising approach

• Create a Personal Fundraising Webpage. Share your story, tell the story ofJonathan Larson, and collect donations in conjunction with a local productionof RENT. Simply go to www.firstgiving.com/marfan and click the green “StartFundraising” button at the top of the page to get started.

o Draft a short yet passionate write-up about your, or a loved one’s, Marfansyndrome or related disorders journey. Feel free to share medical details,but also keep it simple and focus on “why it matters to you.” Your sup-porters will be most interested in how it felt to receive a diagnosis andhow it has impacted your daily life.

o Then incorporate the story of Jonathan Larson and why raising awarenessis so critical.

o At the end, ask them to kindly make a donation. Every little bit counts!

o Include the link to your Firstgiving page in all the pre-event materialsyou distribute, both online and in print, and in your personal socialmedia posts. Share the link with your relatives, friends, neighbors, andco-workers so they can support you, even if they can’t attend any of theperformances.

• End of Show Contribution Collection. Seek permission to address the audienceat intermission or at the end of the show. Alternatively, ask if a cast membercan do it. This “curtain call speech” is an opportunity to talk about JonathanLarson and Marfan syndrome, and why it’s so important to know the signsof the condition. A sample curtain call speech is included in this projectguide. End the speech with a request for donations. Have volunteers standat the exits to the theater with collection baskets to receive contributions.

• Awareness Table Collection Jar. Simply use a canister or a jar to collectcontributions from theater-goers at your awareness table.


COORDINATED FUNDRAISING ACTIVITY

2. Collect donations

Offline donations

• Cash. Cash is simple to collect, but please keep careful records about cashdonations and convert the total to a check or money order in order to sendit to the Foundation.

• Checks. Checks should be payable to The Marfan Foundation, with yourname in the memo so that we can identify it as a donation to your fundraiser.After you collect all the checks and cash, send them to:

The Marfan Foundation22 Manhasset AvenuePort Washington, NY 11050

Involve your friends and family in your awareness and fundraising activities. Ifyou’re recruiting volunteers who aren’t familiar with Marfan syndrome, be sureto take time before you set up your table to share key messages about Marfansyndrome and the Foundation with them. You don’t need to turn them into experts, just give them some basic information so they can explain to otherpeople why they are there.

3. Have fun!

Now it’s time to get out there and help raise funds and awareness about Marfansyndrome and related disorders. Here are some tips for making it a success:

• Remember why you are doing this. Do you have Marfan syndrome or a related disorder? Is somebody you love affected? Why is it important toyou to raise awareness of these conditions? Share this with the people youmeet—they will be more supportive if they understand why you are holdingthe fundraiser and how much their participation and support matters.

• Thank everybody, including your contact person, your volunteers, and any-body else who was helpful. After the project, it is appropriate to send awritten follow-up thank you to your contact person and anyone who helpedalong the way.

If you have any questions about RENT Awareness & Fundraising projects, pleasecontact [email protected].


The following resources are included in this document:

1. Sample letter to the producer

2. Sample letter to the editor

3. Sample press release

4. Sample cover note to accompany press release via email

5. Sample Facebook posts & tweets

6. Sample curtain call speech

7. Letter from Nan & Allan Larson

8. Camera-ready program ad/insert (full color and black & white versions;sized for a program page of 5.5” x 8.5” and 8.5 x 11)


RESOURCES

Date

Name of ProducerAddress

Dear [Name of Producer]:

As a volunteer with The Marfan Foundation, I was excited to learn of your upcoming production of RENT. Did you know that Jonathan Larson, creator ofthis award-winning musical, died suddenly of a misdiagnosed aortic dissectionthought to have been caused by Marfan syndrome? Jonathan’s legacy is morethan his brilliant creative work. His story helps to raise awareness of Marfan syndrome and related disorders so that others do not have to face the samefatal situation.

This is important to me because [fill in details about you or your family who hasMarfan syndrome or a related disorder].

I would like to meet with you to discuss what I [or our group] would like to doto raise awareness of Marfan syndrome and promote your production.

I will contact you in the next few days to set up a time to meet. Or you can contact me to arrange a meeting. In the meantime, please feel free to visit The Marfan Foundation website (marfan.org) to learn more.

Thank you for your consideration.

Sincerely,

Your nameYour phone number / Your email address


SAMPLE LETTER TO THE PRODUCERMail or Email

DateName of EditorAddress

Dear [Editor]:

As [name of theater group] performs RENT [when/where], it puts the spotlighton Marfan syndrome, which is believed to have caused the death of RENTplaywright Jonathan Larson at the age of 35. He did not know he had Marfansyndrome, which puts people at up to 250 times increased risk of aortic dissection(a tear in the large artery that takes blood away from the heart). With a diagnosisand treatment, people with Marfan can live a long life. If they are not diagnosed,they are at risk of a sudden early death.

This is important to me, as well as to other residents of [your area], because ourfamily members are affected by Marfan syndrome. [add concise personal info.]Tragically, half of the people who have Marfan syndrome or a related disorderare not diagnosed. That’s why we want to make sure that people know the signs.

Some features of Marfan syndrome are easier to see than others. These includelong arms, legs, and fingers; tall and thin body type; a curved spine; sunken orprotruding chest; flexible joints; flat feet; crowded teeth; and unexplained stretchmarks on the skin.

Harder-to-detect signs include heart problems, especially related to the aorta,the large blood vessel that carries blood away from the heart.

Other signs include sudden collapse of a lung and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, andearly cataracts.

Anyone who has the disorder, or suspects that a loved one may be affected,can find out more from The Marfan Foundation (marfan.org). They can also callthe Foundation at 516-883-8712, ext. 126. The Foundation can also connect yourreaders to people in our area who are affected.

Thank you for your attention to this important health issue. It could save a life.

Regards,

Your NameCityemail


SAMPLE LETTER TO THE EDITORMail or Email

Contact:Local contact nameEmail addressTelephone numberor [email protected]

Local Production of RENT at (Location) Provides Forum toRaise Awareness of Marfan Syndrome and Save Lives

Marfan Syndrome Community Benefits from the Legacy of Jonathan Larson, RENT Playwright

CITY, ST, Date – When [Name of Local Theater Group’s] production of theBroadway musical, RENT, opens on [Date], it will be an entertaining perform-ance for the community and a tribute to the late RENT playwright JonathanLarson. The show features characters struggling with, and dying from, AIDSbut it is Marfan syndrome, a disorder of the body’s connective tissue, thatclaimed Larson’s life before RENT opened on Broadway.

According to medical experts, tens of thousands of people who have Marfansyndrome are not diagnosed. Without a diagnosis and treatment, they are atrisk of a sudden early death. As RENT is performed by regional theater groups,colleges, and high schools around the country, Jonathan’s family, in conjunctionwith The Marfan Foundation, is hoping that more people learn about Marfansyndrome and get the diagnosis and treatment they need to avoid the fatalepisode that struck Jonathan.

In January 1996, in the days before the final rehearsal of RENT, Larson visitedthe emergency departments at two different hospitals complaining of excruci-ating chest pain. One sent him home with a diagnosis of food poisoning; thesecond diagnosed a mild case of flu. In the middle of the night, without theemergency surgery that could have saved his life, Jonathan died alone in hisNew York City apartment. It was ten days before his 36th birthday.

The cause of the chest pain, and Jonathan’s death, turned out to be an aorticdissection, a tear in the large artery near the heart. Only after his death didJonathan’s family and friends learn that his tall, lanky frame, indented chest,flat feet, long fingers and toes, and flexible joints should have led doctors to apossible Marfan syndrome diagnosis, which would have indicated a need foradditional testing and immediate surgery. The survival rate for emergency surgery to repair a torn aorta is higher than 90 percent.


SAMPLE PRESS RELEASE

“We cannot bring back Jonathan, but it’s not too late for others,” said Al Larson,father of the Tony Award and Pulitzer Prize-winning playwright. “Many peoplehave told us that RENT changed their lives. For those who now become awareof Marfan syndrome and receive proper medical care as a result, the show cantruly be life-saving.”

[Add paragraph on ticket information]

Marfan Syndrome and The Marfan FoundationMarfan syndrome is a life-threatening genetic disorder of the body's connectivetissue. It affects the heart and blood vessels, the bones, and the eyes. Knowingthe signs is the key to early and accurate diagnosis and life-saving treatment.

The Marfan Foundation creates a brighter future for everyone affected byMarfan syndrome and related disorders. It works tirelessly to advance research,serve as a resource for families and healthcare providers, and raise publicawareness.

Learn more and get involved at www.marfan.org.

NOTE TO EDITORS: Local Marfan patients and doctors may be available for interview. If you are interested, please email [email protected] for more information.


SAMPLE PRESS RELEASE continued

Dear Name,

Please see the press release below (note to volunteer: you should paste it in theemail rather than attach it) about the upcoming performance of RENT in(town), Jonathan Larson, the late playwright of RENT, and Marfan syndrome.

Jonathan died in 1996, before his show opened on Broadway. Now, as the (nameof local group) is about to stage the show, it’s a perfect opportunity to raiseawareness of Marfan syndrome, which is believed to have been the cause ofJonathan’s death. About 200,000 people in the U.S. have Marfan or a relateddisorder; according to the medical experts, half of those affected are not diag-nosed and are at risk of a sudden early death.

This is especially important to the Marfan community here in (your town). (Addpersonal information about your family related to Marfan syndrome, local sup-port group, local efforts, etc.)

I would like to suggest [an article or news segment] (specify, depending onwho you are writing to – tv or newspaper) about Marfan syndrome and canarrange for you to interview people from our community with this disorder, aswell as representatives from The Marfan Foundation.

I will be in touch regarding your interest. In the meantime, please visit Marfan.orgto learn more about this potentially life-threatening condition. Thank you foryour consideration.

Your nameYour phone numberYour email address


SAMPLE PRESS RELEASE COVER NOTE

Share pictures of your family members with Marfan syndrome or related disordersand include Marfan.org or link to a particular page on our website.

• Did you know that RENT playwright Jonathan Larson died of an aortic dissection, probably caused by Marfan? I have [or my husband/daughter/son has] Marfan syndrome too. Learn about Marfan syndrome. You couldsave a life. Visit Marfan.org.

• Do you know the signs of Marfan? It affects me [or my husband/mother/sister/ daughter/son/brother] and it was also probably the cause of deathof Jonathan Larson, who wrote RENT. The show is coming to [city] on[date]. Visit Marfan.org to learn more.

• Jonathan Larson, who wrote RENT, died of an aortic dissection. Did youknow my family is also at risk? Learn more at Marfan.org


SAMPLE FACEBOOK POSTS

Follow the theater and tag it in tweets

Follow The Marfan Foundation @NMF_Marfan. Tag the Foundation if you haveroom in your tweets.

• Continue the legacy of Jonathan Larson. See RENT at [theater]. Learnabout #marfan at Marfan.org

• RENT is coming to [city]. Learn about #marfan, which took the life of playwright Jonathan Larson. Marfan.org

• Jonathan Larson did not know he had #Marfan. #KnowTheSigns and save a life. marfan.org/about/signs

SAMPLE TWEETS

Thank you. Your applause is a tribute to Jonathan Larson, RENT’s creator.Jonathan did not live to see his incredible musical open on Broadway. In 1996,just days before the opening, Jonathan visited two New York City emergencyrooms complaining of massive chest pains, and was sent home. A short timelater he collapsed and died from an undiagnosed aortic dissection. Jonathanwas 35 years old.

Jonathan’s aortic dissection is thought to have been caused by Marfan syndrome.If he had been diagnosed correctly, he could have had surgery that would haveprobably saved his life.

People with Marfan syndrome are at a 250 times greater risk for aortic dissectionor rupture than the general public. Marfan syndrome also affects other bodysystems. Today, many people remain undiagnosed. It is estimated that as manyas 200,000 people in the U.S. have Marfan syndrome or a related disorder, buthalf do not know it. Without the diagnosis and treatment, they are at risk of asudden early death, just like Jonathan. With treatment, they can live a longlifespan. The Marfan Foundation raises awareness of Marfan syndrome throughmany efforts. One of their campaigns specifically educates hospital emergencydepartments about how to recognize Marfan syndrome and how to detect andtreat aortic dissection.

We ask that you think of and remember Jonathan Larson and his family. Whileit’s too late for Jonathan, it is our hope that through your generosity, othersliving with Marfan syndrome may be spared the same fate. Several local volun-teers from the Foundation are positioned at (where) and are glad to accept anydonation you can make to support these efforts.

Thank you.


This sample includes arequest for donations. Ifyou are not requestingdonations, please modifyaccordingly.

SAMPLE CURTAIN SPEECH

Dear Friends,

If you perform on-stage, work backstage in one capacity or another, or get tosit out front and applaud, we hope you enjoy RENT! We’re very proud thatJonathan, who wrote the words and music of the show, was our son.

He died suddenly, when he was only 35, of what was technically described as an“aortic dissection.” Eventually, we learned, it was probably caused by Marfansyndrome. It happened not that long ago—1996—but neither Jon, nor we, hisfamily, had ever heard of Marfan. And none of the healthcare professionals whoexamined him recognized the symptoms for what they were.

I have to repeat that: Jonathan died because even the doctors who treated himdidn’t suspect what was wrong. If they had, in all likelihood, he’d still be alivetoday, enjoying life, being a great husband, father, and uncle, and writing moregreat music for the world to enjoy.

Many more people now know about Marfan syndrome than they did at thattime—but it’s still not enough. If the symptoms are recognized beforehand—oreven in the middle of an attack—it’s almost certain that the person’s life can besaved and he or she will live a virtually normal life.

We learned about it too late, so we urge you to take a few minutes to learn aboutMarfan syndrome now, and to help others learn about it too. The life you maysave is guaranteed to be very important to someone, if not the world. Maybeeven to you, personally. You never know. But what you don’t know about Marfansyndrome definitely can hurt you.

We hope you take advantage of the opportunity that your production of Jon’sshow gives you to help raise awareness of Marfan syndrome and aortic dissection.The Marfan Foundation (marfan.org) is available to help you! They have a wealthof information about this quiet killer.

Sincerely,

Nan & Allan Larson


MESSAGE FROM JONATHAN’S PARENTS

1 in 5,000 people have Marfan syndrome, but half are not diagnosed. Knowingthe signs is the key to an early and accurate diagnosis and life-saving treatment.

Jonathan Larson, creator of RENT, died suddenly at the age of 35 of a misdiagnosed

aortic dissection, thought to have been caused by Marfan syndrome.

His death could have been prevented.

SOME FEATURES OF MARFAN SYNDROME ARE EASIER TO SEE THAN OTHERS: Longarms, legs, and fingers | Tall and thin body type | Curved spine | Sunken or protrudingchest | Flexible joints | Flat feet | Crowded teeth | Unexplained stretch marks

HARDER-TO-DETECT SIGNS INCLUDE: Heart problems | Sudden collapse of a lung |Eye problems, including severe nearsightedness, dislocated lens, detached retina, earlyglaucoma, and early cataracts

800-8-MARFANMARFAN.ORG

1 in 5,000 people have Marfan syndrome, but half are not diagnosed. Knowingthe signs is the key to an early and accurate diagnosis and life-saving treatment.

Jonathan Larson, creator of RENT, died suddenly at the age of 35 of a misdiagnosed


His death could have been prevented.

SOME FEATURES OF MARFAN SYNDROME ARE EASIER TO SEE THAN OTHERS: Longarms, legs, and fingers | Tall and thin body type | Curved spine | Sunken or protrudingchest | Flexible joints | Flat feet | Crowded teeth | Unexplained stretch marks

HARDER-TO-DETECT SIGNS INCLUDE: Heart problems | Sudden collapse of a lung |Eye problems, including severe nearsightedness, dislocated lens, detached retina, earlyglaucoma, and early cataracts

800-8-MARFANMARFAN.ORG

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RENT - The Marfan Foundation Project Guide.pdf · of the hit Broadway show, RENT. Jonathan Larson,...

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