Scleroderma Foundation Case Study - May 20 - NESHCO

Monday, May 20, 2013 Christina Relacion Communications Manager [email protected] www.scleroderma.org

USING SOCIAL MEDIA TO HARVEST NEW VOICES:

SCLERODERMA FOUNDATION CASE STUDY

Slides are available on SlideShare

www.slideshare.net/crelacion

Contact: [email protected]

Follow me @crelacion

@scleroderma

www.scleroderma.org

HOUSEKEEPING ITEMS

In this session, you will learn:

How your online relationships can help increase awareness and media interest about your organization

Tactics to build a loyal group of followers and further engage your online communities

Measuring the reach of your community's conversations

WORKSHOP OBJECTIVES

Scleroderma, or systemic sclerosis, is a chronic disease classified as autoimmune rheumatic

The word “sclero” in Greek means “hard,” and the word “derma” in Latin means “skin”

A person’s autoimmune system causes an overproduction of collagen

Affects about 300,000 Americans

Mostly women between ages of 25-55

WHAT 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 scleroderma research funding

Patient support hotline to help answer patient/caregiver calls or emails

Largest national conference for patient education about the disease

Works to educate and create public awareness of the disease

WHAT DOES THE SCLERODERMA FOUNDATION DO?

For more than 20 years, the Scleroderma Foundation has recognized June as Scleroderma Awareness Month

For our organization, we hold more than 40+ special awareness events during the month

June 29 is World Scleroderma Awareness Day

Swiss artist Paul Klee died on June 29, 1940

Work was highly influenced by his scleroderma experience

JUNE: SCLERODERMA AWARENESS MONTH

1. Increase the awareness about scleroderma – what is the disease, who does it affect, etc.

2. Increase awareness of “Stepping Out for Scleroderma” events in 2012.

3. Increase awareness of the Scleroderma Research and Awareness Act in Congress

4. Increase fundraising for the Foundation and its chapters

5. Successfully pitch to national-level media

6. Successfully implement a social campaign

OUR GOALS FOR THIS CAMPAIGN

Small staff in our National Office

10 full-time

3 part-time

Hard to maintain consistent messaging/branding with our chapters and support groups

Organization doesn’t work with a PR firm for media assistance

Very limited budget on a national and local level

Website is outdated and hard to navigate

OUR AWARENESS CHALLENGES

WHERE CAN YOU FIND THE SCLERODERMA FOUNDATION ONLINE?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Women Men

65+

55-64

35-54

18-34

13-17

WHAT WE KNOW ABOUT OUR AUDIENCE

Source: Facebook data, March 2013

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Women Men Hidden

65+

55-64

35-54

18-34

Under 18

WHAT WE KNOW ABOUT OUR AUDIENCE

Source: Inspire Discussion Board data, March 2013

Scleroderma community is highly savvy with social media

Very vocal in online communities

Wants their voice to be heard

Other scleroderma orgs view us as thought leader in new media

OTHER THINGS WE KNOW…

BREAK: RANDOM CUTE ANIMAL PHOTO

Created the first microsite for Scleroderma Awareness Month (www.sclerodermaawareness.org)

Templates for our chapter and support group leaders to ensure messaging remained consistent

media alert | press release templates

e-newsletter copy | fact sheets

Twitter/Facebook messages

Shareable downloads for our supporters

Worked w/ our celebrity spokespeople (Jason Alexander, Kellie Martin and Chris Harrison) to leverage their social networks

WHAT DID WE DO FOR OUR CAMPAIGN?

MICROSITE WWW.SCLERODERMAAWARENESS.ORG

User-created content for our microsite

Easily repurposed for other vehicles

Weekly e-newsletter

Quarterly member magazine

Highly shareable content for social media

Found new advocates to tell his/her story to Congress

TELL YOUR STORY: BECOME A SCLERODERMA CHAMPION

SCLERODOODLE CONTEST

Grand prize >> trip to National Patient Education Conference in Dallas

Profile in our quarterly member magazine

Provided excellent visuals to share someone’s personal journey w/ the disease

Art is therapeutic for those living w/ chronic illness

MORE ABOUT SCLERODOODLES

www.cafepress.com/sclerodermafoundation

CAFÉ PRESS ONLINE STORE

OTHER ITEMS AVAILABLE

DOWNLOADS

Icons to share on social media including icons and cover images (“flair”)

Fact sheet about scleroderma

Talking points to easily have a conversation (“elevator pitch”)

Sample Facebook/Twitter messages

ANOTHER RANDOM DOGGIE PIC

WHAT WORKED & WHAT DIDN’T WORK

*Campaign microsite *Easy to share

*User-submitted content

*Contest voting *Chapter & support group

adoption of campaign

HOW DID WE MEASURE OUR SUCCESS?

ADD THIS

Free embeddable widget, uses HTML Share content on 300+ social networking sites Helps boost traffic to your website Analytics show shares, clicks and other engagement in real-time

Tech Term Defined Widget: A program that performs a simple function, such as providing a weather report. Can be accessed by a user’s computer or mobile device.

Free to setup

Measure how long someone is on your site, where they are from, how did they find your site and much more

Can create action funnels – see if a person completes a specific action (i.e. makes a purchase or completes a survey)

GOOGLE ANALYTICS

Find out how engaged your followers are

View the reach of your content

Learn user’s age and gender

Discover what posts/topics are most popular

FACEBOOK INSIGHTS

OTHER WAYS WE MEASURED

Limited resources don’t mean you can’t run a successful campaign

Provide a high-value incentive for people to share their story

User-submitted content is highly shareable

Make it easy for users to share your content

KEY TAKEAWAYS

ADDITIONAL RESOURCES

“101 Social Media Tactics for Nonprofits” by Melanie Mathos and 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 by your local Social Media Club chapter (www.socialmediaclub.org)

Q&A

Questions?