I can’t believe that the first two months of the new year are already history. 2014 seems to be flying by so quickly.
I am proud to say that 2013 was a really good year for the Hydrocephalus Association (HA), thanks to the contributions of our incredibly dedicated volunteers, generous donors, and talented staff. We had over 14,000 participants at over 30 WALKS and special events across the country. We directly funded over $1 million in research programs this year alone, and helped shepherd an additional $600,000 towards research on hydrocephalus through our partnership with the Rudi Schulte Research Institute. We supported the efforts to develop a clinical research network focused on adult hydrocephalus.
We introduced a whole new audience to the challenges of living with hydrocephalus and the need for more research at our inaugural Vision Dinner. We produced a “Reason for Hope” video about living with hydrocephalus, and debuted it at the Vision Dinner. We engaged former Congresswoman Gabrielle Giffords – she, too, lives with hydrocephalus as a result of a tragic shooting back in 2011 – in helping to build awareness. We grew our network of followers and conversationalists on social media like Facebook, Twitter and LinkedIn from 12,147 to 17,569. We helped 14 young people meet their life goals with scholarships for their continuing education. We educated and supported thousands of new patients and family caregivers, along with medical practitioners and media representatives, by providing medically-sound information and resources about the condition through our community networks, our first ever-webinar, participation in medical conferences, and outreach to both print and broadcast media.
Best of all, we are happy to report that we surpassed our Reason for Hope campaign goal to raise $3 million by the end of 2013. This is a great milestone and was only made possible through the support of loyal members and generous donors dedicated to helping HA achieve its mission.
I could go on and on. As I said, it was a good year.
With the New Year comes new opportunities, new challenges, and new goals. While plans are well underway to implement exciting advancements in 2014, the HA Board of Directors has been very busy working on a new strategic plan for the future of the organization. To prepare for this effort, we were excited to solicit input from a broad spectrum of stakeholders in the community, including our Medical Advisory Board, the volunteer chairs for our WALKS and Community Networks, committee members, researchers, Teens Take Charge members, past scholarship winners, past conference attendees, and others.
Using an online Stakeholder Survey that we launched last fall, we asked respondents to provide answers to 21 questions evaluating current HA programs and services, and sharing insights on new activities the association should consider.
The response was simply AMAZING! We received approximately 600 completed surveys, providing the board with very valuable insights into the association’s strengths, weaknesses and opportunities for the future. You might be interested to learn about some of the highlights that came out of the survey:
- Over 80% of the survey responders believe that HA’s current Mission Statement – “to eliminate the challenges of hydrocephalus” – is compelling as written. Many suggested, however, that the mission include some mention of finding a cure.
- The second part of the Mission Statement describes how the goal of eliminating the challenges of hydrocephalus will be accomplished. The current language says that HA will do this by “by stimulating innovative research and providing support and education for individuals, families and professionals dealing with the condition.” Significant feedback was received recommending the addition of awareness-building and advocacy initiatives.
- In describing the most important outcomes of the association’s efforts in the next 5 years, the responders identified “finding a cure,” “better treatments,” and “providing funding for research.”
- Responders saw HA’s biggest challenges to meeting these goals were “securing adequate funding” and “lack of awareness about the condition.”
- The #1 action the association should take to prepare to meet these challenges was identified as “awareness-building activities/public education.” Second was “increased fundraising,” and third was “advocacy.”
- Priorities for future association activities were identified as “funding research,” “increasing private and public funding,” and “building awareness.”
- Overall, HA’s current programs received good to excellent rating, and lots of ideas for new initiatives were shared.
We asked you to get involved and help us raise the money we need to fund research. You answered.
We asked you to get involved and build awareness and community in your local area. You answered.
We asked you to provide guidance and direction for the future of the association. Again, you answered.
None of us alone can eliminate the challenges of hydrocephalus. With your help, we made big strides in 2013, and will work diligently to continue to do so in the years to come. Thank you for playing your part in that!