2010 TSC Alliance Constituent Survey: Key Findings

The results from the 2010 Constituency Survey will be used to help the TSC Alliance define priorities going forward and guide us as we develop goals and objectives to reach those organizational priorities.

During the week of February 8, 2010, email invitations were sent out to 4,950 unique constituents whose email addresses were available within the TSC Alliance database. Notices were posted in Perspective, as well as on Facebook, Twitter and the TSC Alliance online discussion groups.  The online survey was open from February 11 to April 6, 2010.

To qualify for the survey, respondents had to be 13 years old or older and be individuals with TSC, parents or caregivers of people with TSC, and/or researchers/medical practitioners with an interest in TSC or in the care of people with TSC.  A total of 759 individuals completed the online survey.  A huge thank you to those who took the time to participate!

The following are some of the key findings from the survey.

Respondent Profile

  • Six in ten (59%) respondents are caregivers of individuals with TSC, 12% are individuals with TSC, and 7% are healthcare providers or researchers.  The remaining 25% are “others” who are family members, relatives or acquaintances who are non-primary caregivers.

 Respondent Profile

Perceptions of the TSC Alliance

  • The TSC Alliance is regarded very highly overall on the job it is doing in fulfilling its mission. Two-fifths (43%) rate it “Excellent,” and another two-fifths (38%) rate it “Very Good.”
Overall Rating
  • Over three in five respondents (63%) state the TSC Alliance has improved in fulfilling its mission in the past 5 years. Improvement is attributed to more up-to-date information, increased TSC knowledge and awareness, and more/better research being conducted.
Improvement in Past 5 Years
  • The TSC Alliance scores highly on providing easy-to-understand, usable and timely information, as well as on offering volunteer opportunities to raise TSC awareness and funding.
  • Three-fourths (76%) of respondents are satisfied with their most recent contact with the TSC Alliance.
  • Nearly all respondents (95%) selected at least one positive descriptor to describe the TSC Alliance. Top 3 were supportive, caring, and professional; Bottom 3: well-funded, cutting edge, innovative. Two-fifths (37%) chose at least one negative descriptor (“under-funded” was selected most often).

Future Guidance

  • Increasing funding for basic research and clinical trials and providing latest information on TSC research are constituents’ top priorities.
Activities to Pursue
  • Serving as a referral vehicle to connect TSC families to medical professionals, holding conferences for medical professionals, launching a nationwide media campaign to raise awareness of TSC and support TSC research, and providing information on legislative issues affecting TSC families are all second-tier priorities.

Relationship with the TSC Alliance

  • The largest proportion of the respondents (60%) consider themselves as Members. Three in ten (28%) define themselves as Donors with and one-fifth (21%) as Volunteers.
  • Four in five respondents (82%) have ever contacted the TSC Alliance. The majority of those who have never contacted the organization have not had any need to do so. TSC Clinics are the most mentioned alternative resource.
  • The majority of constituents (76%) have made a donation to the TSC Alliance in the past. Despite current economic challenges, anticipated donations for the upcoming year are comparable (70%) or up (19%).
  • Two-fifths of constituents (43%) have attended a TSC Alliance event. Reasons for non-attendance are generally proximity- or affordability-related.

TSC Alliance Resources and Communication

  • Among the TSC Alliance resources, the website nets the highest awareness (91%) and usage (76%), followed distantly by Perspective, brochures and information sheets. The website is visited at least every 2-3 months by more than half of constituents and is very well received. It is also the most used source for obtaining TSC information.
  • Among events and programs, fundraising events and the National TSC Conference enjoy the highest awareness; however, only about a third have ever attended a fundraiser and just over 10% have ever attended a National TSC Conference.
  • The TSC Alliance website and email are the communication modes used by the highest proportion of respondents, with email leading as the most preferred communication mode. Almost all who receive emails from the TSC Alliance usually open and read them, and most feel the emails are informative.

Special Thanks

This study could not have been completed without the support of the following people:

  • TSC Alliance Board Members Reiko Donato and Henry Shapiro, who spearheaded this project;
  • Nan Martin of Revelation Research, a Chicago-area marketing research and consulting firm, who assisted in the analysis and presentation of results;
  • Avichal Jha and Kristin Bishop, of Los Angeles-based marketing research firm MarketCast, who assisted in drafting the questionnaire, checking and fine-tuning the survey program, and running data tabulations and statistical analyses; and
  • Jonathan Ephraim, Doyle Clawson, and Thao Vy of Intellisurvey, which graciously donated programming and hosting resources for the timely and seamless completion of this important research endeavor.