This presentation will be available on SlideShare as well as on the flash drives provided to you by NESHCo. If you need to contact me in the future, here is my information.We will have a few minutes at the end of the session to go over some questions. Now, let’s get started!
In this session, we are going to be covering a lot of information in a short period of time. So, don’t hesitate to come back and view the slide deck to review something that you were unsure about.We will go over the following:How your online relationships can help increase awareness and media interest about your organizationTactics to build a loyal group of followers and further engage your online communitiesMeasuring the reach of your community's conversations
Facebook data (as of March 2013) -- 86.7% female vs 12.6% male
Inspire results: March 2013 -- 83.1% female vs. 12.5% male vs. 4.3% hidden
Just a break for a cute animal photoLet’s take a quick mental break. Here’s a cute photo of my doggie Dakota. This is his “What-is-Mommy-doing-face”?
Our theme for the entire campaign was “I.AM. SCLERODERMA.” While some patients were very adamant that they didn’t like the theme, it did cause people to discuss the disease with others. Our hope with the theme was to have people understand that a person is more than their disease. That the family members, friends, caregivers, health professionals, researchers – all of those people who are connected with the disease make up scleroderma. Not just the person who is diagnosed with it. We received a variety of pieces of artwork from people of all different ages across the country. Here are just a few of my personal favorites…
The idea for this contest came from one we had previously done for our annual holiday card. We generally have that open to children so we wanted to give people of all ages the chance to take part in a creative contest.
In the end, we decided that all of the finalists from the sclerodoodle contest would have their artwork appear on special apparel. Rare Disease Day is held each year in March and led by NORD – the National Organization of Rare Diseases. In 2012, they created an online store with special awareness merchandise. This was our a-ha moment for our annual awareness campaign. We created an online store for free using CafePress. This helped us manage the costs and staff time for having to manage inventory as well as a wide array of sizes for apparel. We also didn’t have to accrue any of the postage costs. We were able to select how much we wanted to charge for the items, resulting in a portion of each purchase coming back to the Foundation to help our programs and services.
In addition to the merchandise that featured the sclerodoodle finalists, we also created some other apparel items that included a branded 2012 tag cloud for awareness month. We also created a highly-popular “Ask Me About Scleroderma” logo that people really enjoyed because it helped spark questions and conversations with strangers. We also had items for children, baby onesies, bags and water bottles, and even stuffed animals and shirts for dogs.
One final doggie pic before we head into this last section of the session…
If you can only take away three or four pieces of information from this workshop, these are it.
Here are some other websites that can help you with using social media to connect with your community:
Let’s take a few quick questions.Say goodbye and thank you for attending!
Scleroderma Foundation Case Study - May 20 - NESHCO
Monday, May 20, 2013Christina RelacionCommunications Managercrelacion@scleroderma.orgwww.scleroderma.orgUSING SOCIAL MEDIA TOHARVEST NEW VOICES:SCLERODERMA FOUNDATION CASE STUDY
Slides are available on SlideSharewww.slideshare.net/crelacionContact: email@example.comFollow me @firstname.lastname@example.orgHOUSEKEEPING ITEMS
In this session, you will learn:How your online relationships can help increaseawareness and media interest about yourorganizationTactics to build a loyal group of followers andfurther engage your online communitiesMeasuring the reach of your communitysconversationsWORKSHOP OBJECTIVES
Scleroderma, or systemic sclerosis, is a chronicdisease classified as autoimmune rheumaticThe word “sclero” in Greek means “hard,” andthe word “derma” in Latin means “skin”A person’s autoimmune system causes anoverproduction of collagenAffects about 300,000 AmericansMostly women between ages of 25-55WHAT IS SCLERODERMA?Source: “Understanding and Managing Scleroderma,” Maureen D. Mayes, M.D.,M.P.H.; and Khanh T. Ho, M.D., published by the Scleroderma Foundation, 2012.
24 chapters and 150 support groups in the U.S.Leading nonprofit supporter of sclerodermaresearch fundingPatient support hotline to help answerpatient/caregiver calls or emailsLargest national conference for patienteducation about the diseaseWorks to educate and create public awarenessof the diseaseWHAT DOES THESCLERODERMA FOUNDATION DO?
For more than 20 years, the SclerodermaFoundation has recognized June as SclerodermaAwareness MonthFor our organization, we hold more than 40+special awareness events during the monthJune 29 is World Scleroderma Awareness DaySwiss artist Paul Klee died on June 29, 1940Work was highly influenced by his sclerodermaexperienceJUNE: SCLERODERMA AWARENESS MONTH
1. Increase the awareness about scleroderma – what is thedisease, who does it affect, etc.2. Increase awareness of “Stepping Out for Scleroderma”events in 2012.3. Increase awareness of the Scleroderma Research andAwareness Act in Congress4. Increase fundraising for the Foundation and its chapters5. Successfully pitch to national-level media6. Successfully implement a social campaignOUR GOALS FOR THIS CAMPAIGN
Small staff in our National Office10 full-time3 part-timeHard to maintain consistent messaging/brandingwith our chapters and support groupsOrganization doesn’t work with a PR firm formedia assistanceVery limited budget on a national and local levelWebsite is outdated and hard to navigateOUR AWARENESS CHALLENGES
WHERE CAN YOU FIND THESCLERODERMA FOUNDATION ONLINE?
0%10%20%30%40%50%60%70%80%90%Women Men65+55-6435-5418-3413-17WHAT WE KNOW ABOUT OUR AUDIENCESource: Facebook data, March 2013
0%10%20%30%40%50%60%70%80%90%Women Men Hidden65+55-6435-5418-34Under 18WHAT WE KNOW ABOUT OUR AUDIENCESource: Inspire Discussion Board data, March 2013
Sclerodermacommunity is highlysavvy with socialmediaVery vocal in onlinecommunitiesWants their voice tobe heardOther sclerodermaorgs view us asthought leader in newmediaOTHER THINGS WE KNOW…
Created the first microsite for SclerodermaAwareness Month (www.sclerodermaawareness.org)Templates for our chapter and support groupleaders to ensure messaging remained consistentmedia alert | press release templatese-newsletter copy | fact sheetsTwitter/Facebook messagesShareable downloads for our supportersWorked w/ our celebrity spokespeople (JasonAlexander, Kellie Martin and Chris Harrison) toleverage their social networksWHAT DID WE DO FOR OUR CAMPAIGN?
Grand prize >> trip toNational Patient EducationConference in Dallas Profile in our quarterlymember magazine Provided excellent visualsto share someone’spersonal journey w/ thedisease Art is therapeutic for thoseliving w/ chronic illnessMORE ABOUT SCLERODOODLES
www.cafepress.com/sclerodermafoundationCAFÉ PRESS ONLINE STORE
DOWNLOADS Icons to share on socialmedia including icons andcover images (“flair”) Fact sheet aboutscleroderma Talking points to easilyhave a conversation(“elevator pitch”) Sample Facebook/Twittermessages
ADD THISFree embeddable widget, uses HTMLShare content on 300+ social networking sitesHelps boost traffic to your websiteAnalytics show shares, clicks and other engagement inreal-timeTech Term DefinedWidget: A program that performs a simple function, such as providing aweather report. Can be accessed by a user’s computer or mobile device.
Free to setupMeasure how long someone is on your site,where they are from, how did they find your siteand much moreCan create action funnels – see if a personcompletes a specific action (i.e. makes apurchase or completes a survey)GOOGLE ANALYTICS
Find out howengaged yourfollowers areView the reachof your contentLearn user’s ageand genderDiscover whatposts/topics aremost popularFACEBOOK INSIGHTS
Limited resourcesdon’t mean you can’trun a successfulcampaignProvide a high-valueincentive for peopleto share their storyUser-submittedcontent is highlyshareableMake it easy forusers to share yourcontentKEY TAKEAWAYS
ADDITIONAL RESOURCES “101 Social Media Tactics for Nonprofits” by Melanie Mathosand Chad Norman, John Wiley & Sons Inc. (2012) Sign up for email newsletters from JD Lasica and Socialbrite(www.socialbrite.org) Freebies/online training by Kivi Leroux Miller(www.nonprofitmarketingguide.com) Networking, learning events byyour local Social Media Club chapter(www.socialmediaclub.org)