It seems everywhere I turn these days, someone or something serves to remind me just how blessed I have been. That’s not to deny that I, like everyone, has challenges, sometimes very tough challenges. Yet, at this juncture – my one year anniversary of working for the Hydrocephalus Association – I am drawn to look back at what has transpired these last 12 months and appreciate not only what has been accomplished but more importantly, the wonderful people I have come to know along the way.
Among the highlights for me include:
- Working collaboratively with then interim-CEO and current Board Member Rick Smith as I started my journey here at HA last December. Rick has been a boundless resource, mentor and cheerleader in what can only be described as a whirlwind year full of learning opportunities.
- Being moved, encouraged and motivated by the over 300 patients, family members and caregivers who attended our National Conference and walked the halls of Congress to share their stories with their Congressional representatives in order to build a greater awareness among public policy makers about the need for greater funding for research.
- Gaining a deep appreciation for the dedication, perseverance and drive of the association’s staff – both those in the California office and our newer staff here in Bethesda. This small group of professionals does a herculean job each and every day on behalf of our members, and I am proud to be working alongside them.
- Becoming awe-struck and inspired to watch as over 100 of the most renowned researchers and scientists gathered together in July at our special research conference to take stock of the research work being done to study the causes, diagnosis, and treatments of hydrocephalus.
- Absorbing as much as I could about the efforts contributed on all our behalf by the many volunteers who run hydrocephalus WALKS, special events, and support groups in their local communities. A special thank you to veteran Walk Chairs Mia Padron, Phyllis Rogers and Eileen Rodger who have taken numerous hours – and no doubt quite a bit of patience – to share the benefit of their experience with me during my “honeymoon” year.
- Gaining insight into the challenges of being a care-giver to someone with hydrocephalus; whether that caregiver is a family member or a medical practitioner, all face circumstances where attempts to provide the best care can be faced with obstacles. So often, these efforts are overlooked or taken for granted – thus, the reason for our special caregivers “Thank You” page called the Magic of Our Caregivers.
- Admiring all of you who care deeply about our cause, who read these blogs or our other literature, who show up at our Walks, who help someone at one of our Support Group meetings or via our social media sites – in short, for the entire community of people focused on beating hydrocephalus. It takes an army, and we appreciate your being a foot soldier in that army!
- There aren’t words enough to express the respect and awe I have for our outgoing Chairman Paul Gross. He has not only been a tireless driver for the association’s strategic research initiatives, but has done a remarkable job leading the board through a challenging time of transition. No board member I have ever worked with knows as much about the inner and outer workings of an organization – nor has any put in as many hours in the quest to advance its mission. Anyone interested in seeing the challenges of hydrocephalus being eliminated owes Paul a huge debt of gratitude.
Now, debt is something we are hearing a lot about here in Washington these days. With all the discussions going on about the impending fiscal cliff, it may seem foolhardy to preach hopefulness for the year(s) ahead. Yet, reflecting on the year that has just passed isn’t enough. We all need to look forward to what the future holds – and the hope we all need to cherish – as it is that hope that will sustain the work we all wish to accomplish.
There is much reason to be hopeful. Preliminary research findings funded by our very generous donors are teaching us new insights never before understood, such as a surgical protocol that can reduce infection rates by 30 percent, and a greater understanding of the role of the lymphatic system in the re-absorption of CSF (and the potential for altering that absorption rate with the use of drugs).
So, in this special season so focused on gratitude, what are you thankful for…and, what are you hopeful for?