This presentation was given in May 2013 to the New England Society of Healthcare Communicators at their annual conference in Rhode Island.

1. Monday, May 20, 2013
Christina Relacion
Communications Manager
crelacion@scleroderma.org
www.scleroderma.org
USING SOCIAL MEDIA TO
HARVEST NEW VOICES:
SCLERODERMA FOUNDATION CASE STUDY

2. Slides are available on SlideShare
www.slideshare.net/crelacion
Contact: crelacion@scleroderma.org
Follow me @crelacion
@scleroderma
www.scleroderma.org
HOUSEKEEPING ITEMS

3. 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

4. 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.

5. 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?

6. 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

7. 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

8. 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

9. WHERE CAN YOU FIND THE
SCLERODERMA FOUNDATION ONLINE?

10. 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

11. 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

12. 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…

13. BREAK: RANDOM CUTE ANIMAL PHOTO

14. 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?

15. MICROSITE
WWW.SCLERODERMAAWARENESS.ORG

16.  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

17. SCLERODOODLE CONTEST

18.  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

19. www.cafepress.com/sclerodermafoundation
CAFÉ PRESS ONLINE STORE

20. OTHER ITEMS AVAILABLE

21. 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

22. ANOTHER RANDOM DOGGIE PIC

23. WHAT WORKED & WHAT DIDN’T WORK
*Campaign microsite
*Easy to share
*User-submitted content
*Contest voting
*Chapter & support group
adoption of campaign

24. HOW DID WE MEASURE OUR SUCCESS?

25. 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.

26. 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

27. 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

28. OTHER WAYS WE MEASURED

29. 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

30. 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)

31. Q&A
Questions?