Usher Syndrome Family Engagement Survey Results
Self-reflection is a valuable tool for learning and evolving, and after not being able to connect with our USH1B rare community as we had hoped, we conducted a survey to better understand why; and learn how we could potentially increase family engagement.
We started Save Sight Now - a patient lead research organization - to act as a conduit for USH1B families to ensure their donations reach the most promising RP/USH1B researchers; and to act as a communal fundraising platform for all families to leverage, feel a part of and contribute to at any level.
In the rare disease space, there are over 7,000 rare diseases competing for attention; and not nearly enough researchers and funding to address them all. Patient lead organizations backed by their rare community who are organized, motivated, loud and persistent are the only ones who drive progress for their disorder. In order to accelerate research we need support from our USH1B community. Applicable treatments exist today, but it’s up to us to ensure Usher Syndrome Type 1B is a funded target for new medical strategies.
Survey Results
Below are the survey results. It’s important to note that we only asked individuals who are directly impacted by Usher Syndrome Type 1B. This includes individuals living w/ Ush1B, Mom, Dad, Grandparents and other caregivers. Only 34% of families who were contacted or made aware of the survey responded and 95% of everyone polled was familiar with Save Sight Now and past fundraising events. In the following sections we’ll summarize our high level take aways from these results, offer some feedback and share how we plan on making these learnings actionable moving forward.
Overall Response rate
While this stat is not ideal, it was better than what we expected. It represents a small but mighty group within the USH1B community whom we look forward to working with.
Who Responded to the survey & how many supported campaigns
We learned that moms were the most engaged and a fair amount of grandparents were engaged as well. We also learned that 27% of people surveyed did not support fundraising campaigns by promoting or donating which is a disappointing stat.
Common Reasons for not supporting
27% of respondents did not support SSN - these were their most common reasons: 1) I’m supporting another organization and 2) I’m not living in the US.
Treatment Importance vs. Involvement Interest
Finding a treatment is incredibly important for a high percentage of the community, especially everyone we surveyed with USH1B. Although the interest to get involved isn’t as great as the importance for finding a treatment, it still reflects a significant desire to help Save Sight Now.
How I’d Like to Get Involved
This is the most impactful data we collected. It represents a significant amount people who want to help, but just need some guidance and options.
Summary
Overall we recorded low USH1B community engagement - obviously not what we were hoping for, but in line with what we have been experiencing. Less than 40% of the community we have exposure to supported Save Sight Now fundraising campaigns, which was in stark contrast to the high importance the majority of individuals placed on finding a cure or treatment. We see this as an opportunity for growth. If the majority of the USH1B community is prioritizing a treatment, but not supporting the only USH1B research focused organization, perhaps we need to do a better job of sharing our strategy and mission. Even though we would reach our goal faster with more support from our USH1B community we are thankful for those that responded and who want to actively be involved. We don’t need 100% participation from our community to make a significant impact.
We learned that the two most common reasons for not supporting SSN are that people were supporting another organization or did not live in the US. We think it’s possible and necessary for our USH1B community to support multiple Usher organizations; and degrees of support can vary depending on personal prioritization. Some organizations focus on education, support and advocacy while others focus on medical treatments. We think all are important which is why we promote and support all other transparent Usher organizations.
We also learned that some of the USH1B community felt they couldn’t support or promote SSN because they live outside of the US. We actually had many non Usher Syndrome community supporters from outside the country donate and promote during our campaigns. We understand there is an extra layer of difficulty when recruiting support in another country, but that’s one of the reasons we partnered with the Foundation Fighting Blindness - the worlds largest international IRD foundation funding research. This partnership strengthens SSN’s credibility as a valid and international organization. USH1B effects thousands of people outside of the US and we all share a common goal regardless of where we are in the world. The internet has no borders and neither should our reach. We’ll be focusing on addressing this issue.
This survey was incredibly valuable and educational for our organization. It gave us insight into what percent of the USH1B community wants to be involved - and how. It exposed some gaps in our messaging strategy and confirmed that we still have a lot more to do.
Next Steps
We’ll be reaching out to everyone who left their contact information and wants to actively be involved. We’d like to understand everyones comfort level in regards to how they would like to support. We also discovered that there are individuals who would like to be on the board of SSN and we are more than happy to discuss what that entails. In the next couple of weeks we’ll be creating some high level ‘how-to’ information in regards to supporting campaigns, hosting campaigns and how we can help with all of it. Thank you again to everyone who participated!
If you would like to be involved, but didn’t leave your contact information please feel free to reach out to us here: justin@savesightnow.org or you can send us a message on Facebook.
“The Future depends on what we do in the present”
