As we wrap up 2013, I can’t help but spend a few minutes reflecting on (and sometimes marveling at) all that has happened this past year. I hope you will spend a few minutes with me in this reflection of what I would consider some of the highlights.
Now, each and every year HA starts out with goals that steer the work undertaken. 2013 was no exception to that. In short, we wanted to raise more awareness, fund more research, and provide more education and support to a broader group of people. I am very happy to report that we, indeed, have done all that:
- Thanks to our very generous supporters, HA has funded almost $1 million in new research this year alone. Since the start of our “A Reason for Hope” campaign, we’ve provided nearly $3 million dollars in funding for research. Compared with other conditions/diseases, this is still just a beginning, but it is a much greater number than the hydrocephalus community has seen in the past.
- HA has also led the effort to establish a new collaborative research effort for the study of hydrocephalus in adults. Much progress was made this past year in that effort by contracting with a data coordinating center and developing data collection tools specifically for this adult-focused research.
- Our awareness program has increased exponentially, with our inaugural Vision Dinner held in New York City this past October; a new video about living with hydrocephalus; a stronger, more vibrant presence in social media (Facebook, Twitter, LinkedIn and YouTube); an ever-expanding WALK to End Hydrocephalus program, including increased public relations focused on the WALKS in local markets; and our working with Congress and our participation in a number of coalitions in Washington, D.C., that help to raise the profile of the condition in public policy circles.
- HA provides education and support in a growing number of ways – through publications, products, one-on-one support, local community networks & support groups, and educational programming/events. This year, HA added to its publication offering with new fact sheets addressing the primary care needs of children and understanding shunt systems. For the first time, we also offered webinars for patients and caretakers. These interactive sessions provide an opportunity for experts in the field to share their knowledge and experience about issues important to the community. The first webinar, entitled “What if It Isn’t Alzheimer’s or Parkinson’s,” was conducted by Dr. Michael Williams and received great reviews.
In addition to my abbreviated list of goal-directed accomplishments above, we are very proud to point out that we also undertook a very special initiative this year. You might remember that we established our new offices in Bethesda, Maryland (the suburbs of Washington, D.C.) in the summer of 2012, and moved into our permanent office space that fall. As you can imagine, this move meant many changes in our operations and a necessary focus on the future.
That said, we wanted to hold onto the culture of caring, the legacy so carefully planted and nurtured over the years by the founders of the association and all of the volunteers and staff who were involved with the organization along the way. To help educate our newest team members (both volunteer and staff), and to pay tribute to the association’s 30 year milestone, we undertook our “Looking Back…Moving Forward” initiative. Through a series of weekly blogs posted on our website and carried in our newsletters, we were able to showcase our rich history and the extraordinary people who have been involved in HA. Our deepest thanks go out to all of these superstars who contributed so much in the past, continue to assist today, and helped us keep our history alive by either writing or agreeing to be interviewed for this blog series.
We have much to be proud of, and no shortage of work to propel us forward into the new year. I hope you have enjoyed our journey this past year, and we look forward to traveling the road with you in the year ahead. Wishing you a happy, healthy and safe 2014!