Scleroderma Foundation Case Study - May 20 - NESHCO
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?
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…
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?
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
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
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
23. WHAT WORKED & WHAT DIDN’T WORK
*Campaign microsite
*Easy to share
*User-submitted content
*Contest voting
*Chapter & support group
adoption of campaign
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
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)
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!