Looking Back…Moving Forward: Houston, We Have Lift Off!

As we continue our interview series commemorating our 30th anniversary, this week Randi Corey, our National Director of Special Events & Volunteer Support, sits down with our Houston WALK Co-Chair, Margaret Powers. Margaret chaired last year’s inaugural Houston WALK – without the assistance of a Co-Chair! The event was tremendously successful. Despite a deluge, this first-year event raised over $23,000 from more than 300 participants. In our interview, Margaret shares her thoughts about the Hydrocephalus Association and starting and coordinating a WALK.

RANDI: Margaret, I’d love to get your thoughts about why you and other volunteers are willing to take on this project — starting and leading a HA WALK. Although I know that having a loved one with hydrocephalus is a powerful motivator, I don’t believe that’s the only reason volunteers do this. A million American’s have hydrocephalus but only a handful contact HA to ask about starting and coordinating a HA WALK. And it’s extremely proactive on the part of the volunteer — as you know, HA doesn’t have the resources to actively search for volunteers to serve as WALK Chairs.

MARGARET: Actually, Randi, I think you really did recruit me… maybe without realizing it. I wanted to know more about “what was involved in running a WALK” and you explained it to me in a way that made me realize that I would not be re-inventing the wheel and I would not be doing this alone.

RANDI: I’ve often wondered if there’s a common denominator among our WALK Chairs (and support group leaders) – something that makes them willing to step forward and take the lead. We know it isn’t a lot of “extra time” – most of our WALK Chairs work outside the home and have a family, often including a child with hydrocephalus. Your thoughts?

MARGARET: I’ve been reading a book about what makes people engaged. Faith is the focus of this book. I can honestly say that if I extrapolate three of the four basic signs, they fit the WALK chairs that I know. One of the signs is prayer, and I can say that I’ve prayed a lot about hydrocephalus, but I don’t know what the equivalent would be for a WALK chair activity. The three signs that I think apply to HA’s WALK Chairs are:

1. Study – from the moment Daniel was diagnosed, I had an insatiable appetite for knowledge. Once I finally realized that all the knowledge I could possibly gain would not “fix” hydrocephalus, I redirected my energies into other activities.

2. Generosity – although financial generosity is a component, so is the willingness to reach out to people, knowing that weaknesses and frailties will be revealed. And frankly, after all Daniel has been through, I don’t care if people know I have weaknesses and frailties.

3. Evangelization (or zealousness) – the willingness to talk to people about what I know, while being very cognizant of the fact that I am not a medical professional, as well as sharing in the experiences I’ve had with hydrocephalus, which leads to a more universal feeling of wanting the best for our loved ones.

I think those three characteristics could easily be applied to HA WALK Chairs – they are willing and eager to “study,” to learn how to coordinate a HA WALK, to learn all they can about how to make their event the best it can be. They are certainly very generous – financially, yes, but more importantly with their time, talent and energy. As to their zealousness – HA WALK Chairs are passionate about HA and its mission. Nothing will stop them from doing everything they can to provide HA with the resources it needs to accomplish its mission.

RANDI: I think you definitely hit the nail on the head! Although you’ve only led one WALK to date, do you have a favorite WALK moment or memory?

MARGARET: My favorite WALK memory is seeing the 300+ people, who WERE ‘the WALK’, mingling in the shelter where our event was held. Knowing that I (along with all the incredible volunteers) helped set the stage for all these people to gather, to raise money toward a cure, and to connect with each other was incredibly satisfying. Despite a few setbacks including plans that fell through and rain that stopped only long enough for the course to be walked, it was a huge success because people really, really wanted to be there!

RANDI: How did you first find HA and why did you decide to volunteer?

MARGARET: In 1992 my son (and my husband and I) was “med-evaced” (evacuated for medical reasons) from South Korea because Daniel had just been diagnosed with hydrocephalus at age 15 months. After meeting with the neurosurgeon I needed more information. I don’t recall how I obtained it but I found HA’s phone number somewhere in the medical library of the Tripler Army Medical Center. I called HA in San Francisco and spoke with Emily Fudge, among others. They gave me an enormous sense of courage. During the subsequent years I turned to HA again and again –when I needed more information or support. When we lived in St. Louis, I joined the HA support group started by Debby Buffa. I even attended one of the HA conferences.

I knew for years I wanted to do something to give back to this organization which had helped us so much. I received an email from HA looking for volunteers to help start a local WALK. I ended up chairing the Houston WALK.

RANDI: How does your family feel about your serving as a WALK Chair? (They, too, sacrifice for the WALK…) Do they get involved?

MARGARET: My sons both love it! They were thrilled that I took it on, but were not quite as helpful with tasks as I hoped they could be, mostly due to their schedules and time constraints. My husband worries about my health and, although he supports the undertaking, he, too, is not able to help as much with the duties in the weeks leading up to the event as he would like — again due to conflicting priorities and time issues. My extended family is thrilled and both of my sisters want to be here in September for Houston’s 2nd HA WALK.

I have found that I need to do more detailed planning with them to let them know what all is involved and when they are needed. When it comes down to it, they will do anything I ask, but I try not to overburden them. My son Daniel, who has hydrocephalus, was home from college for the week before and after the WALK due to shunt problems. Thankfully, no surgery was needed, and he did manage to walk the route, which was a real achievement, given how awful he was feeling. Event day was so hectic but my husband and sons were like shining stars for me! And Daniel is very proud of the fact that I’m involved. I hope, in the future, after he’s finished college, he will take the bull by the horns and get involved with every aspect of HA.

RANDI: What do you feel HA WALKs do for the hydrocephalus community?

MARGARET: Every person I spoke with at the 2012 Houston WALK was so grateful that we held the WALK. It was such a huge morale booster for everyone to have hydrocephalus recognized as a medical condition that needs more awareness and to know that HA is taking greater steps toward a cure. It gave them a way to “fight back” and to get involved. Not just attending the event but donating, too. So often it feels as if there is nothing you can do. A visit with another family is often the extent of what someone can do – which is PRICELESS – but presenting an opportunity to financially support the organization (in whatever amount they could) gave people a way to demonstrate their desire to help and empowered them. The donations people make to HA help boost the morale of all of those dealing with hydrocephalus because a cure can’t be found if no one is looking!!

RANDI: Where would you like to see HA 5 years from now?

MARGARET: In five years I hope to see HA providing greater advocacy, education and support to a larger audience and funding even more research. Because hydrocephalus is so complex and complicated, I believe that research will be necessary for many years in the future. Even when a cure for the most common type of hydrocephalus is found, continued research will be needed. And those advances will be used in ways that we cannot even begin to imagine, at present.

RANDI: What message do you have for the HA staff?

MARGARET: Thank you so much for being there! For all of the things you do – for being a part of such an important undertaking. It takes all of us to accomplish amazing things and you all deserve kudos as much as any of the volunteers. We couldn’t do what we do without you!

RANDI: What message do you have for the HA Board of Directors?

MARGARET: As I’m sure you are all well aware, you hold in your hands the hope and well-being of future generations of people with hydrocephalus, as well as those living with this condition today. Please know that, even if you rarely hear it, there are so many of us who are so thankful for you sharing your time, talent and energy with HA. I have read many of your bios and know that you are corporate America’s movers and shakers — thank you for focusing on HA!

RANDI: What message do you have for the founding members of HA (like Emily Fudge?)

MARGARET: Thank you, thank you, thank you! Thank you for being there and thank you for all you’ve done to make HA what it is today.

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