Living LFS Social Media Strategy
We’ve reached the end of this course (plus a little) and I’ve learned a lot about how social media can be not only an important part of a non-profit business, but an overall strategy to drive towards our organization’s goals.
At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome (LFS) by connecting them with care, resources, and others who are Living LFS.
Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene. There are many types of TP53 mutations. People with this mutation have a higher risk of developing cancer over their lifetime. LFS affects each individual differently, even within the same family. Some families with LFS have higher rates of cancer incidence, while others do not. Nearly 100% of women with LFS get cancer in their lifetimes. Men have a 70% or greater chance. It’s our mission to make sure families living withing the LFS blast radius get the care, information, and sense of community that they need. Receiving an LFS diagnosis is both devastating in its impact and isolating in its rarity.
How does this align with Social Media? Our founder Jen Mallory was diagnosed with Li-Fraumeni Syndrome and metastatic breast cancer in 2012. At the time, there were only thought to be 400 families with LFS in the world. Realizing the importance of connecting these isolated families together and advocating for this rare disease she started a Facebook Support Group in 2013. As the group grew, she founded Living LFS, and it was registered as a 501c3 non-profit in 2014.
Jen posted blogs, connected with other families, and built a board of directors. Together the board held fundraisers and sold branded merchandise. They began attending advocacy events in places like Rare Disease Week in Washington DC and provided travel scholarships to LFS specific events. Living LFS continued to grow but has gone through its ups and downs as its board of directors is made mostly of patients who are often “cancering”. Jen herself became sick stepped back from the posts, and stepped down as president of the organization. She left enormous shoes to fill and we needed a plan. That’s where this class came in.
The first thing that really opened my eyes was the TOFU, MOFU, BOFU marketing funnel.
After looking at the funnel the first thing that came to mind was the question “what are we actually trying to do?” or "What does conversion mean for us?”. After reflecting on it, to us, conversion means three things
1) Families found our support group and connected with others
2) A person donates
3) A person signs up for volunteering
The next step was to understand who exactly our customer was. When we started doing this we noticed a few things. First, the most active people in the group, on our social media pages, and within our volunteer ranks were women.
Second, the people were mainly from the United States but interestingly also in Australia and the UK.
And finally, we really did a terrible job at keeping track of who our donors were.
Overall the social media strategy will have two main paths. The first is to ensure that all of our social media accounts are pointing to our Facebook support groups.This ensures that the people with Li-Fraumeni Syndrome are connecting with other families and can get the information and care that they need. This also serves as the eco-system to pump all of our fundraising, campaigning, and other information through.
The second was ensuring that people found our website through google and that our website directed people to our volunteer signup, fundraising, support groups and donation pages.
Now that we evaluated who our end conversion customer was we decided to look at how we did against each of the items listed in the funnel at each of the steps. After going through the entire list we created actions which will translate into our 2021 goals.
Before even getting through the first layer of the funnel we can see how the number of blogs and our content has fallen off over the years.
The actions from the TOFU section were all around getting our content going and distributed through our social media channels described above.
We found that we had a very limited prescense on Twitter and zero existance on TikTok. Luckily during the semester we found a woman on Tiktok who has agreed to volunteer and we’re just launching our tiktok account. She has also agreed to take over our twitter account where there is a large medical community presence that we can leverage.
View this post on Instagram
A post shared by Living LFS - Li-Fraumeni (@livinglifraumeni)
The other part of the funnel which we addressed this November was going live with our new donor management platform called network for good. I realized that we have very limited data on our donors and that it was spread across many platforms including paypal, physical mail, facebook, and venmo. We consolidated all this data into one place. This also allows us to say thank you much easier.
In the MOFU section of the review we found that we really need to just broadcast the information that we have in a better way. We have a ton of content that sits and is stagnent. The new donor management platform will help us with email blasts for both new and old donors and famililes. We can build many of these actions into our board approved goals for the year.
In the final section we will focus on conversations. Once we have people funnelling into the group we need to take advantage of their willingness to help. We have tons of volunteers and have historically struggled to manage them. The new donation platform allows for peer to peer fundraising where people can manage their own fundraisers without the need of much assistance from the board.
So we have a plan for the future now. A plan that we will make sure that Jen’s vision guides every decision we make, but with a little more structure and thought behind it. On Saturday we had a memorial for Jen where all said goodbye but we know that her vision and passion to support those with LFS will carry on in everyone who is a part of Living LFS








