The Advocate. Creating awareness: From the beginning. Sample letters to your representatives pg 4

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1 Armchair Activist: Sample letters to your represetatives pg 4 The Advocate 2016 Advocacy Newsletter Creatig awareess: From the begiig I 2001, two Massachusetts mothers plaed a commuity walk, desiged to raise fuds for myositis research ad also to educate the commuity about the rare disease their daughters shared. "If you say 'cacer,' everyoe respods," said Jaet Goodell. "But say 'myositis' ad you just get a blak look. No oe uderstads what you mea." Goodell is the mother of a dermatomyositis patiet, ad she had a history of orgaizig local evets for a cause. She was also a commuity urse, ad educatig people about various coditios was secod ature to her. To draw attetio to myositis, she ad her frieds desiged some whimsical posters aroud the theme, "Musclig out myositis," with stick figures takig impossibly giat steps, a graphic remiiscet of the "Keep o truckig" posters illustratig the famous Grateful Dead sog. As part of her campaig, Goodell prevailed upo the Goveror of Massachusetts to declare September 21 "Myositis Awareess Day." The idea grew ad by September 21, 2002, there were evets i Califoria, Virgiia ad Pesylvaia, alog with "Myositis Awareess Day" proclamatios at the state ad local levels. I the followig years, TMA members used their cosiderable creativity to pla walks, competitios ad media coverage. Oe member desiged a "myositis cookbook" ad others asked for doatios to TMA istead of birthday gifts. People brought materials to their doctors' offices. Oe especially ambitious family member coviced other family members ad frieds to climb Mt. Kilimajaro to raise awareess of the disease. Several years later, TMA was successful i gettig the U.S. House of Represetatives to pass House Resolutio 974 recogizig Myositis Awareess. TMA members, staff ad board members talked about myositis o Capitol Hill. Fabio, the famous model ad actor, joied them via video to tell the story of a family fried i Italy with iclusiobody myositis. Fifty-three members of Cogress were co-sposors of the resolutio that passed o September 25, Every year, TMA members ad support groups cotiue to pla special evets for "Myositis Awareess" to iterest their eighbors ad local media i learig more about the disease. This publicatio is desiged as a guide for ayoe iterested i drawig attetio to the eed for more educatio ad support for myositis patiets ad the pressig eed for better treatmets ad a cure.

2 Published by: TMA, Ic. The MyoSiTiS ASSociATio 1737 Kig Street, Suite 600 Alexadria, VA P: E: F: W: Executive Director: Bob Goldberg Editor: Theresa Reyolds Curry BoArd of directors Terry D. Aderso, Chair Daa P. Ascherma, M.D., Vice-Chair Doree Cahoo Augie DeAugustiis Christopher Dotur Carol Hatfield Reee Later, Secretary Marvi Lauwasser Joh McClu Theresa Morris William Prall Carla Steveso Joh C. Suttle, Treasurer Pat Zeer MedicAl AdviSory BoArd Daa P. Ascherma, M.D., Chair Rohit Aggarwal, M.D., M.S. Helee Alexaderso, Ph.D. Christia Charles-Schoema, M.D., Nomiatig Chair Mariae de Visser, M.D. Maze Dimachkie, M.D., FAAN Namita A. Goyal, M.D. Steve Greeberg, M.D. Wael Najib Jarjour, M.D. Thomas E. Lloyd, M.D., Ph.D. Susa Maillard, MSC, MCSP, SRP Adrew Mamme, M.D., Ph.D., Vice-Chair Neil McHugh, M.D. Margherita Miloe, M.D., Ph.D. Kaeboyia Nagaraju, D.V.M., Ph.D. Chester V. Oddis, M.D. A Reed, M.D. Ruth A Vleugels, MPH, M.D. Corad C. Weihl, M.D., Ph.D. Steve Ytterberg, M.D., Research Chair STAff Theresa Curry, Commuicatios Maager Bob Goldberg, Executive Director Aisha Morrow, Operatios Maager Charlia Sachez, Member Services Maager Why the eed for awareess? I 1996, the America Autoimmue Related Diseases Associatio (AARDA) bega to track the umber of years it takes ad the umber of doctors a patiet sees from the oset of symptoms to proper diagosis. Accordig to the most recet aalysis, patiets report it takes more tha three-ad-a-half years ad early five doctors to receive a correct autoimmue disease diagosis. Myositis patiets are part of this larger group ad may -- icludig fratic parets of drastically weakeed childre -- fid that a great deal of damage is doe durig this wait. For example, members of a TMA support group i Virgiia rallied to help a family whose mother had fially received a myositis diagosis after several years of serious symptoms. By ad phoe, TMA s mid-atlatic support group recommeded specialists i the Richmod area, ad the grateful family trasferred the hospitalized woma to a appropriate teachig hospital. Sadly, the relatively youg woma died soo after the trasfer. I a to TMA, the daughter said, "If oly we had kow about The Myositis Associatio, its support groups ad its medical advisory board, I believe the outcome would have bee very differet." Ay effort that icreases awareess amog family doctors, allied health professioals ad the geeral public icreases the chaces of positive patiet outcomes. As alarmig as the thought of the three-ad-a-half-year wait for a correct diagosis may be, it's actually better tha the results of the first AARDA survey that foud it took five years ad six doctors to get a diagosis. "This results i patiets sufferig eedlessly ad ofte sustaiig more severe, irreversible orga damage, said AARDA board member Dr. Staley Figer. May factors figure ito this gap betwee symptoms ad treatmet. I a survey of family physicias, AARDA foud: 64 percet of family physicias stated they are ucomfortable or stressed whe diagosig autoimmue disease i patiets. 73 percet do ot believe they received adequate traiig i diagosig ad treatig autoimmue diseases. 57 percet reported they had oly oe or two lectures o autoimmue disease i medical school. The Istitute of Medicie reports that the U.S. is behid other coutries i research ito the process ivolved i autoimmue disease. With 50 millio Americas sufferig from autoimmue disease, ad its positio amog the top te causes of death for wome ad female childre, this situatio is a sad oe for patiets with complicated symptoms that do ot fit with diseases that are better recogized ad uderstood. 2 The Advocate

3 Advocacy chages lives Advocacy is oe of those words that ca mea may thigs to differet people. But, i terms of advocacy for patiets sufferig from a rare disease, it meas havig your voice heard through a associatio represetig the patiets iterests or by idividuals advocatig for their ow iterests ad those others who fid themselves i a similar predicamet. idividual advocacy TMA Board of Directors member ad active duty U.S. Air Force pilot Chris Dotur has bee workig for appropriate govermet recogitio of iclusio-body myositis. Major Dotur, who has a hereditary form of IBM, was facig the ed of both his flyig ad military careers. Dotur was i a "Medical Evaluatio Board" for two years, a process where the military determies a perso's disability ad discharge coditios. Kowig that other military veteras with myositis would beefit from his experiece, Major Dotur challeged the bureaucratic classificatio of his disease, which did ot adequately ackowledge the disease severity ad its impact o his life. Dotur ad his legal team used a argumet to compel Vetera's Affairs to compare his disease to ALS (Lou Gehrig's disease) ad icrease the ratig. Veteras Affairs fially agreed with the legal argumet ad awarded him 100% disability, with extra compesatio ad beefits. Dotur, who is also active i TMA's outreach to veteras with myositis, passed o his story to help other myositis patiets who are veteras, ad to iform patiets ad doctors iteractig with the U.S. govermet. His success establishes a modicum of precedece for myositis diseases i the cotext of Veteras Admiistratio ratigs. collaborative advocacy It would be difficult to overestimate the ifluece of well-orgaized patiet advocacy groups. Collaboratios betwee rare disease orgaizatios have effectively impacted the govermet bodies that have oversight for medical research ad regulatory processes. These collaboratios have played a sigificat role i the adoptio of public policies affectig patiets, available research fudig, ad other factors affectig medical research ad drug developmet. Some of the sigificat results of these collaborative efforts were the adoptio of the Orpha Drug Act; subsequet legislatio providig for the desigatio of breakthrough therapy" to esure patiets have accelerated access to treatmets; ad the establishmet, i 2002, of the Office of Rare Diseases at the Natioal Istitutes of Health. educate your commuity Takig part i a civic meetig or evet is a great way to build a relatioship with busiessme ad local politicias ad ad to raise the profile of your myositis group. Groups like the Rotary, Kiwais, Ruritas, Elks ad Lios geerally meet regularly i your commuity or district throughout the year ad provide a opportuity at every meetig for speakers of iterest. Tips for preparig to speak Determie the purpose ad toe of the evet. Fid out what the overall ageda of the meetig will focus o, who else is expected to participate or make a presetatio, ad the aticipated toe of the meetig. This will help you to prepare your remarks ad delivery style. Use your etwork. Brig some other myositis patiets, if appropriate, ad let your associates withi the group kow that you will be presetig, so everyoe will show up. Be prepared with accurate, timely, ad relevat iformatio, ad leave some time for questios. If the group awards scholarships or yearly grats, apply for a scholarship for a studet with myositis or a grat that will help with your commuity educatio efforts. Oce a group ivests moey i a orgaizatio, they are likely to become more iterested ad ivolved The Advocate 3

4 4 TMA advocates for you lobbyig To effectively advocate for the iterests of those with myositis, TMA works with Cogress ad federal agecies to make sure the voices of myositis patiets are heard. The results of these efforts have bee that TMA succeeded i gettig Cogress to provide fudig for a myositis patiet registry which was completed i 2013 ad ow serves as a resource for researchers lookig for cadidates for cliical trials. TMA also persuaded Cogress to provide fuds for a study to idetify potetial evirometal triggers of myositis. These successful efforts i lobbyig Cogress are examples of just oe form of advocacy. State Capitol Room 1116 P.O. Box Licol, NE RE: LB 322 STRONGLY SUPPORT Dear Seator, The Myositis Associatio, represetig patiets who suffer from the cripplig, icurable euromuscular disease myositis, thak you for itroducig LB 322, which esures that Nebraskas have access to reasoable prescriptio drug beefits without havig to pay outrageous amouts of moey for these life-savig treatmets. The efforts of health plas to create specialty tiers that require paymet by patiets of a sizable percetage of prescriptio drug costs ca bakrupt patiets of eve moderate icome. They are beig asked to pay thousads of dollars mothly for these treatmets. Because specialty drugs are geerally classified i Tier 4, the highest ad most expesive tier, isurers are abadoig the traditioal arragemet that had patiets payig a fixed amout of $10, $20 or $30 as a co-pay for a prescriptio, ad istead are chargig patiets so much that patiets essetially are beig deied access to vital, life-savig medicatios. Isurace is a meas by which health risk is spread across a pool of payers. Yet to sigle out those eedig expesive medicatios ad chargig them a exorbitat amout for the drug, egates the very reaso they have bee payig for isurace i the first place to be protected from severe fiacial hardship should they become ill. Seator, we eed your leadership to see that this practice is restricted or elimiated i Nebraska so that patiets are ot left with the choice of either forgoig desperately eeded medicatios or becomig bakrupt without ay further meas to afford the treatmet keepig them alive. Please do what you ca to help! Appreciatively, Your sigature regulatory advocacy Federal ad state agecies, or regulatory bodies, ca greatly ifluece the care received by patiets ad reimbursemet for medical services. As a advocate for the myositis commuity of patiets ad physicias, TMA has established relatioships with federal agecies such as the Ceters for Medicare ad Medicaid Services, Natioal Istitutes of Health, Food ad Drug Admiistratio, ad Departmet of Health ad Huma Services. TMA s advocacy with these agecies has bee to ecourage more federal research dollars goig toward myositis research, appropriate reimbursemet of treatmets for myositis such as itraveous immuoglobuli (IVIG), Medicare coverage of devices eeded by myositis patiets such as elevatig seats o power wheelchairs, etc. Additioally, TMA has hosted evets o Capitol Hill i Washigto, DC to educate Cogress about myositis ad how legislators eed to serve their cositituets who have myositis. Grassroots lobbyig Members of Cogress wat to hear from costituets i their cogressioal district or their state. State isurace commissioers eed to kow from myositis patiets how state programs ad isurers i the state are servig the myositis commuity. Ad, othig has more impact with these policymakers tha hearig directly from their costituets, the grassroots. That is where idividuals with myositis ca help TMA better advocate ad better serve the etire myositis commuity. I a represetative democracy, your legislators are elected to represet all of their costituets, icludig those with diseases few people have ever heard of. Your voice eeds to be heard, ot just for you, but for all those ow ad i the future who have myositis. Grassroots lobbyig by myositis patiets has so far resulted i early 50 states, couties ad cities passig proclamatios recogizig myositis awareess day. These proclamatios have bee accompaied by public ceremoies where ews media were otified ad provided coverage of the 4 The Advocate

5 Nothig has more impact with these policymakers tha hearig directly from their costituets, the grassroots. issuace of the proclamatio. While there was ot a specific, tagible beefit other tha a piece of paper recogizig myositis, these activities ad evets raised awareess of the disease ad drew attetio to the fact that those sufferig from a rare disease are as importat as those livig with commo diseases, such as cacer ad diabetes, which everyoe has heard of. Dear Members of Cogress, Uless you have a family member or a fried with myositis, a rare autoimmue disease, most likely you ve ever heard of it. Myositis is a euromuscular disease that weakes ad destroys muscle, ofte resultig i the eed for a wheelchair or other assistive devices. Its oset ca be subtle or sudde. Because it s costatly beig misdiagosed or overlooked, it is ot eve kow for sure how may people have myositis. The Myositis Associatio is a small orgaizatio, fillig a critical eed for myositis patiets who look to it for iformatio ad support. With the fiacial support of our members, TMA has fuded its ow research program ad awarded myositis-specific research grats ad fellowships i the past two years. The cost to society of autoimmue disease is becomig clearer. A recet study revealed that autoimmue diseases are a leadig cause of death. Amog adult wome, autoimmue disease is the seveth leadig cause of death excludig accidets ad homicides. Uited States House of Represetatives Raybur House Office Buildig Washigto, DC Dear Cogressma: I live o (isert street) i the tow of (isert tow) i your cogressioal district. I am writig to ask for your support for XXX. Myositis is a autoimmue disease that causes iflammatio of the muscles. I have bee diagosed with myositis sice (isert year) ad have bee affected by it i umerous ways o a daily basis. (Paragraph by Idividual) By fudig XXX, you will eable there to be a better uderstadig of the disease ad facilitate research advacemets ito all forms of myositis. This is critical to improve diagosig ad treatig myositis. Because my disease is so rare, few people are aware of it or care eough to help support research ito this disease. As a costituet, I am askig that you take a iterest i this disease so that I ad others with this disease ca remai productive members of society. With your help, we ca discover better treatmets ad ultimately a cure for this devastatig euromuscular disease. Sicerely, Your sigature Although The Myositis Associatio does t have celebrity spokespersos amog its members, TMA has may heroes. They are everyday people who suffer terribly but remai hopeful that a cure ad the cause of myositis will soo be discovered. Eclosed you will fid iformatio about The Myositis Associatio ad autoimmue disease. Please take the time to review this iformatio ad cosider how you ca help i the fight agaist myositis. For additioal iformatio, or should you have ay questios, please call Sicerely, Your sigature O these pages are sample letters that ca be used to commuicate with those who ca impact the services provided to myositis patiets. These letters ca be modified to your particular cause ad are oly examples of some of the types of letters that ca be used to commuicate with legislators, regulators ad policymakers. fid your represetative Not sure of your cogressioal district or who your member is? Fid your district ad represetatives, with liks to your member's website ad cotact page usig oly your zip code at: Call, write, , visit: let your voice be heard! The Advocate 5

6 Fudraisig iforms the public Although fudraisig is ot ordiarily thought of as advocacy, the process of fudraisig sesitizes ad iforms the public about rare diseases such as myositis i additio to raisig much eeded fuds for patiet ad physicia educatio, support groups ad research. Team Tommy foudatio starts a movemet i florida Fouders of the Team Tommy Foudatio, Daa Worthigto ad Laurie Boyer, are the wife ad sister of the late Tommy Worthigto, a deputy ad detective with the St. Lucie Couty Sheriff's Departmet (Florida) who lost his battle with dermatomyositis ad iterstitial lug disease i After beig diagosed, Tommy was trasferred to the Uiversity of Miami Hospital for specialized care. Ufortuately, Tommy died five weeks after beig hospitalized. Daa ad Laurie were determied to hoor his wishes ad co-fouded Team Tommy Foudatio. The moey raised by the Foudatio has assisted families with medical expeses, eased fiacial burdes, ad eabled others to atted TMA s Aual Patiet Coferece. Tread for Sully sheds light o myositis i Bosto area I April 2012, Matthew G. Sulliva IV died from dermatomyositis. His sister, Beth Trout, orgaized a evet i his memory with a uique twist: the Rayham Athletic Club sposored a 24-hour treadmill ru o the frot law of their buildig, lovigly etitled Tread for Sully. The evet raised fuds to help brig awareess to the devastatio caused by myositis ad to aid i research for a cure. housto TMA member orgaizes commuity fudraiser through Kroger Rose Mary Istre, leader of the Housto, Texas support group, was diagosed with dermatomyositis more tha 25 years ago. Sice she became a TMA member, she has supported efforts to spread awareess about the disease. We empowered ourselves with a fudraisig project that most everyoe could joi i, said Istre. Patiets, family, frieds ad caregivers all go grocery shoppig ad Kroger offers a commuity service program for orgaizatios to receive a portio of the proceeds from all purchases made throughout the year at Kroger. Istre said she always has myositis iformatio with her whe she shops ad chooses a log lie at the grocery store to egage waitig customers i coversatio about myositis ad to ask if they would help our cause. Everyoe I spoke to was happy to help, she said. frakli family Every year for the past 11 years, members of the Frakli family have hosted fudraisig evets to beefit The Myositis Associatio. A family traditio, early all 8 childre ad may gradchildre take part i evets to hoor Madge Frakli ad her battle agaist iclusio-body myositis. Their evets rage from sports cotests, to the aual Miles for Myositis ru, to milestoe aiversary diers, to special birthday diers. It is a family effort that ivolves early 30 members of the family. The Frakli family focuses o spreadig the word about myositis ad havig fu as a family as they raise moey ad get together with frieds, busiess acquaitaces ad others watig to help. dagmar Slave s walk i the park Each year, i Braitree, Massachusetts, members of Dagmar Slave s family gather to walk a trail through the quiet wooded Pod Meadow Park. It is a small family gatherig that icludes exteded family ad frieds watig to joi together ad show their support for Dagmar who has bee battlig iclusio-body myositis sice Though cofied to a wheelchair, Dagmar makes the trek each year to the park ad proudly greets family ad frieds. Her daughter records the evet ad afterward produces a beautiful video keepsake capturig memorable momets from the Walk set to music. 6 The Advocate

7 Raisig awareess creatig public awareess of rare diseases is critical to brigig attetio to these diseases. Public evets are particularly helpful i drawig attetio to your cause. Baseball aoucer iforms the public he has iclusio-body myositis Whe Sa Fracisco Giats baseball aoucer Mike Krukow revealed i a ewspaper article i 2014 that he had iclusio-body myositis, TMA was swamped with calls ad s of cocer. The impact of a public ico aoucig that he had a rare disease was evidet ad is aother example of how oe evet ca icrease awareess of a disease dramatically. The ext baseball seaso the Giats had a special day at the stadium to hoor Krukow ad icrease public awareess of the disease. As Krukow stood at home plate with his family before the game sharig his experiece over the ballpark s public address system, tes of thousads of Bay area fas leared for the first time what myositis is. ibm patiet ispired by TMA coferece spreads awareess i log islad Salvador Negro, IV, a IBM patiet hailig from Log Islad, NY, atteded TMA s Aual Patiet Coferece i After meetig may other patiets, doctors ad myositis experts, Sal decided he would take this experiece ad make a differece back home. With his ispiratio ad eergy -- ad with his coleader, Melissa Marcoi -- the Log Islad Support Group hosted a very successful First Aual Valetie s Day Dier Dace fudraiser at Bella Verde Restaurat i Bretwood, NY. He plas to cotiue myositis awareess efforts o Log Islad by hostig a summer evet as well. Baltimore area support group walks rolls to promote research Each October, the MD, DE, DC, Norther VA Support Group, coducts a 5k Ru, Walk Roll to raise awareess ad fuds for myositis research. Support group leader, Jey Silverberg, with the help of several voluteers, elists the area s myositis commuity to participate i this fu fudraiser, with fuds raised to beefit myositis research through TMA ad the Johs Hopkis Myositis Ceter. Pedao family ad Sabia family hold golf outigs for awareess The family of Joseph Pedao, a youg boy who has had juveile dermatomyositis sice he was two years old, has held a golf outig i the Philadelphia area for more tha 10 cosecutive years. It is a family evet that aually draws may busiess associates ad frieds to gather, ejoy a roud of golf ad a awards dier afterwards to raise fuds for juveile myositis research. The family of Madelie Sabia who died i 2010 ad had iclusio-body myositis has held a golf outig i Stamford, CT several times sice Madelie passed away, to rally the close-kit Stamford commuity ad remember Madelie. Each of these evets are ejoyable afteroos ad eveigs for the participats, but more importatly, they raise awareess of myositis ad remid the public of the ogoig eed for more research ad support for those sufferig from the disease The Advocate 7

8 Tools ad tactics for raisig awareess The followig is a listig of some of the may ways that myositis patiets ad families ca seek publicity about myositis, whether for Myositis Awareess, a huma iterest story, or simply a support group meetig. Gettig attetio While the plight of a small umber of people with a rare disease does't appear to be earthshakig ews, gettig publicity for myositis-related evets is t that difficult, particularly if you live i a small tow, a well-established suburb, or a rural area. You may be surprised to fid televisio, radio ad ewspaper reporters are very iterested i huma iterest features such as a perso with a rare disease. Ofte, the way you preset your story ad the relatioships you establish with reporters will be the key to success. The followig poiters should help: Start small Thik locally. Although TMA ad its members have tried for years to draw the attetio of atioal talk show hosts, your best bet for coverage is right i your ow hometow. Editors ad ews directors like sources they ca reach immediately as deadlies loom. I fact, may editors of eve big-city ewspapers ad regioal ews shows pride themselves o their good local stories. Most media outlets today have a way to submit a story idea olie. Ad it's still possible i may tows ad small cities to pick up the phoe or drop ito the ewspaper office. look for alteratives Fid the eighborhood or alterative ewspapers ad televisio shows that cover stories like yours. Fid ews shows that target a certai audiece. For istace, a farmer with iclusio-body myositis was featured i a "Dow o the Farm" episode o his local public televisio statio that later was show atioally. Hospitals today ofte have their ow publicatios desiged to draw support from local officials ad patros. Fid out who produces the oe published by your hospital ad pitch your story. If you have a active support group, make sure the hospital icludes it i its olie or prit listig of patiet resources. do't overlook the obvious Radio ad televisio statios eed public service aoucemets to keep their liceses. They'll be able to tur your 8 The Advocate

9 ews release ito a short aoucemet. Ask them to iterview you or other KIT support group members o the air for a loger story, or provide live coverage for your evet. Use every opportuity for wider publicity Whe you're sposorig a specific evet, such as a myositis awareess walk, offer for you or others at the evet to be iterviewed for a story about your experiece with myositis. Editors will wat to explai what myositis is ad how it affects people alog with their coverage of the evet. Work with reporters It's a good sig if a editor assigs a reporter to your story. It meas that you've succeeded i catchig the iterest of a professioal prit or broadcast jouralist. Whe the photographer or camerame show up at your evet, your best bet for coverage is to have somethig iterestig visually as part of your evet, ad you should metio it i your ews release. Ofte your best chace at publicity is through the reporter rather tha the editor of the local ews show or ewspaper. Take a look at who does huma iterest ad health stories. I may small cities, it's the weatherma o televisio, or a specially-desigated feature writer o the ewspaper staff. Approach that perso as well as the editor. Prepare for media coverage If you are to be iterviewed at a evet, work to preset your positio or statemet as early i the evet as you are able, as the media is more likely to atted ad cover the first part of the evet. Keep your presetatio brief. Limit your statemet to three clear ad cocise poits. Provide persuasive facts to assist participats to uderstad ad remember your poits. Practice your statemet to esure you are comfortable ad covicig whe sharig your poits with a larger audiece. Provide writte copies of your statemet to the media. If you are speakig spotaeously, have somethig more formal available so the media ca add to your statemet before it's aired. Sometimes the perso with the most iformatio gets the logest coverage. follow up Followig up o your ews release is importat, but make sure you do it i a professioal way. Do't sed your release to more tha oe jouralist at the same publicatio without lettig each kow. If there are rival ewspapers or televisio statios i your area, it's okay to sed them the same short ews release, but do't arrage a ews coferece ad ivite them both, or work o the same kid of feature with two differet ewspapers. If two rivals become iterested i your story as a result of your ews release, be truthful about it ad work with the reporters to fid differet agles. Do't flood media outlets with faxes or s. If followig up by phoe, make sure it has ot bee too log sice you set out your ews release. Should the jouralist ot recall receivig the release, ask if you ca sed it agai. If leavig a phoe message, make it short, oaccusatory, ad with all the appropriate details. Above all, try to form lastig relatioships with your city media. They'll respect you if you submit timely caledar items, do your homework o loger features, provide iterestig visuals, ad tell them well ahead of time if you wat live coverage. If you're disappoited i the respose, do ot call the publisher ad advertisers to complai. Nothig alieates a editor more tha questioig his or her ews judgmet. Cotiue to suggest ewsworthy ideas, ad you'll evetually get good results. Use social media Write a blog about your persoal jourey with myositis ad share it o your social media accouts (Facebook, Twitter, Istagram, etc), taggig TMA ad usig hashtags below. I additio, read blogs writte by others ad share their blog o your social media. Ask ay busiesses that support you, especially oe that may furish the place where your support group meets, to post otices of your meetig o their social media chaels. Cotact local hospitals to post support group evets o their olie caledars ad social media. Ecourage frieds, family members, ad all support group members to follow TMA o Facebook ad Twitter. Lik your support group social media pages to TMA s. Share ad re-tweet Myositis Awareess cotet i the moth of May ad throughout the year. You ever kow if your post will reach someoe who has t yet heard of myositis or is strugglig with symptoms ad seekig a diagosis. Myositis Awareess could help a ew patiet or family! Facebook: Twitter: Hashtags: #MyositisAwareess #MyMyositis #KowMyositis Use TMA's website TMA sposors several forums through its website as well as ways to directly post caledar evets. Make sure to use these for your group's Myositis Awareess evets as well as your regular meetigs. Have a especially effective idea or iterestig story? It may be of iterest to TMA's membership, either through the support group etwork or TMA's quarterly ewsletter, OutLook The Advocate 9

10 Creative advocacy ad awareess visitig professors series Besides iformally metorig residets ad medical studets at their ow istitutios, TMA's medical advisors participate i TMA's "Visitig Professor Series," travelig to medical schools ad academic health ceters to educate residets ad medical studets about myositis. This series has bee well-accepted i the medical commuity, with more tha 30 medical schools requestig a TMA medical advisor to preset at their istitutio. Stregth i umbers Oe importat way that patiets, families ad medical professioals ca raise awareess is to spread the word about the public health sigificace of rare diseases. Sice it's discouragig for myositis patiets to remember the grim days of their ow diagostic delay (see page 2), it's uderstadable that they may wat to put the whole problem behid them. But everyoe familiar with myositis has a role to play, ad some of the followig facts may help: Rare diseases are 1 i 10. Ayoe who has metioed that to frieds ca expect a surprised reactio. Te percet of Americas have rare diseases? There s good reaso to thik that most family doctors would be just as surprised. Uderstadably, doctors-i-traiig are taught to focus their diagostic efforts o commo diseases rather tha rare oes. The medical school adage, Whe you hear hoof beats, thik horses, ot zebras, makes sese uless you are a zebra. racig for myositis? A few years ago, TMA asked several horse farms i Ketucky to iclude the word "myositis" i the ames of racehorses to brig attetio to our disease. Airdrie Stud's ower, Goveror Brereto Joes, readily offered to help ad icluded the word "myositis" i the ames of three of his horses - Stop Myositis, Myositis Survivor, ad Myositis Da. Although oe of them made it to the Ketucky Derby, each has draw attetio to our rare disease. Racig fas at the racetrack ad at home watchig o TV or o their computer heard the word myositis several times durig each race. It is estimated that early 10 millio people i the U.S. heard or read the word myositis metioed whe they were racig! The umbers add up. It s the size of the problem that seems to escape public otice. The Natioal Orgaizatio for Rare Disorders (NORD) tells us that the umber of people with rare disease is roughly the same as the umber with asthma. There are almost 30 millio of us oe o every crowded elevator, four o every full bus. We are roughly equal to the populatio of Caada.There are six times as may rare disease patiets as there are patiets with Alzheimer s. For every perso with HIV or AIDS, there are 30 people with a rare disease, but this is the most tellig statistic by far: rare disease patiets outumber cacer patiets 2 to 1.There are so may rare disease patiets that the average doctor sees at least two to three o every workig day. They are as commo as diabetics. What you ca do. We've explaied throughout this special advocacy ewsletter about ways to raise awareess of myositis amog policymakers ad the commuity at large. The most effective sigle way, however, for you to make a differece, is to help TMA reach every myositis patiet. Share our posts o Facebook, talk about us i your visits to your family doctor ad specialists, leave materials every place that udiagosed or ew patiets might be foud, ad publicize your support group as widely as possible i your commuity. With every myositis patiet o board, we will truly make a differece. For more ideas or materials, always feel free to TMA at tma@myositis.org. 10 The Advocate

11 Educate Start here Ready to start educatig your commuity, local ad atioal policymakers ad health professioal orgaizatios about myositis? Do't forget to check TMA's website for resources before you begi. Go to for materials, icludig: Become a card-carryig myositis advocate TMA ow offers members a coveiet way to educate frieds ad associates about myositis with persoalized iformatio cards you ca use i the same maer as you would a busiess card. The frot side of the card displays your ame, phoe umber ad address alog with cotact iformatio for TMA. The reverse side has a brief, plai laguage descriptio of either DM, PM, or IBM. You select which disease descriptio you wat. These cards ca be used as a iformal busiess card that also directs people to the TMA website, where they ca lear more about myositis. Myositis 101. Help ew patiets, family physicias, caregivers ad the commuity-at-large to lear the facts about a complicated ad poorly-uderstood disease. TMA has published a itroductory brochure that will help your audiece uderstad the symptoms, treatmet ad complicatios of myositis. For your free copy, or to arrage for more tha oe copy for a awareess campaig, TMA@myositis.org or call Myositis: A Physicia's Guide to the Iflammatory Myopathies. This guide, writte ad reviewed by iteratioal myositis experts, cotais up-to-date iformatio o diagosig ad treatig all forms of myositis. For free copies, TMA@myositis.org or call Advacig the World's Uderstadig of Myositis. TMA's research program has approved early 50 grats ad fellowships, totalig over $5 millio, sice TMA bega fudig research i Review a copy olie at uder "Research" or to receive a free copy, TMA@myositis.org or call A UPS Store i Gaiesville, GA produces these cards for TMA. For $25 you will receive 100 persoalized iformatio cards. Shippig is icluded i the $25 price. To order your custom cards, cotact UPS by at store6134@theupsstore.com or call Never doubt that a small group of thoughtful, committed citizes ca chage the world. Ideed, it's the oly thig that ever has. Margaret Mead The Advocate 11

12 The Advocate Speak Up, Advocate ad Create Awareess of Myositis