A Season for Thanks

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Dawn Mancuso, CEO, Hydrocephalus AssociationI can’t believe that the holiday season is almost upon us. I don’t know about you, but I feel like I blinked and the calendar advanced 6 – 7 pages. I guess that is the down side of having a busy schedule.

Some of the things that has kept me so busy these last few months has been a number of activities that have kept me outside of the office:

  • A fantastic WALK (10th anniversary!) in Chicago. It was just one of the 38 different WALKS we held in 2014. Many thanks to WALK Chairs Katie Cook, Zahadita Kudrna, Andrea O’Shea, Stacy Buckner….and everyone in Chicago for their remarkable hospitality. Click on this link for some photos of their fantastic event.
  • A meeting of researchers involved in the Hydrocephalus Clinical Research Network, where we talked about how to get to work on a shunt placement study being led by Dr. William Whitehead out of Texas Children’s Hospital in Houston. This study recently received a 1.8 million grant from the Patient Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization which was established by the Patient Protection and Affordable Care Act of 2010.
  • A training meeting for the research coordinators who will start collecting data very shortly as part of the newly-launched Adult Hydrocephalus Clinical Research Network.
  • An Advocacy Day program, Rally Day for Medical Research, as well as a special briefing for the Hydrocephalus Congressional Caucus.
  • A planning meeting with representatives from a number of other organizations as well as the Centers for Disease Control and Prevention (CDC) in Atlanta as part of an on-going effort to establish an alliance that addresses new strategies for global recognition, funding, and prevention of both hydrocephalus and spina bifida.
  • Our 2nd Annual Vision Dinner in New York City that serves to raise both awareness and funds for hydrocephalus and is underwritten by very special supporters, Craig & Vicki Brown.
  • NINDS Non-Profit Forum where patient advocacy groups get to interact with leaders of NIH’s National Institute for Neurological Diseases and Stroke (NINDS) to address better ways to collaborate to address the medical needs of the patient community.
  • Our Fall Board of Directors meeting in Seattle, Washington, where we continued work on the association’s strategic plan and welcomed new board members Susan Fiorella; Mark Hamilton, MD; Jennifer Pope; Eileen Rodger; and Michael Williams, MD.

All this since September! Of course, this list isn’t exhaustive, and doesn’t include the many events and meetings that other HA staff members and volunteers have participated in. Clearly, the stronger the association gets, the louder our voice, the broader our reach, and the greater our progress towards seeing a day when no one has to suffer from the challenges of living with hydrocephalus.

Now, all this headway could never be made by one person alone. Nor could our small number of staff members be solely responsible. It is the teamwork we are so thankful to share with an abundance of highly dedicated and committed volunteers at all levels of the organization: WALK & Special Event co-chairs and volunteers, Community Network chairs and supporters, advocates who participate in our advocacy efforts, researchers, clinicians and other scientists, partner organizations, donors, committee members and board members.

What makes people give up their precious and already over-committed time to work with us on our projects? We will never understand this fully – each volunteer surely has his/her own personal reasons. We like to think that we provide a fulfilling and enjoyable volunteer experience. We hear from our volunteers that they want to make a difference for themselves, their child, or loved one, and that working with HA is one way to do that. Getting engaged gives the volunteer a stronger voice in the work of the organization, and for some, additional knowledge, or a new set of skills that can be used in other venues. We know that the bonds of friendship that are established as a result of working collaboratively with other volunteers can provide a network of support and a richness to life.

Whatever the reason why, we are immensely grateful to all who chose to work with us in fighting this life-changing condition. Despite my reluctance to admit that 2014 is almost behind us, I can’t help but embrace the spirit of the Thanksgiving season to share my heartfelt appreciation, admiration and awe to all of them.

The Hydrocephalus Association welcomes anyone interested in volunteering. For more information, visit www.hydroassoc.com/get-involved or send an email to: info@hydroassoc.org.

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