Looking Back…Moving Forward: Leading the Charge to WALK to End Hydrocephalus

This Saturday, the San Francisco WALK celebrates 20 years of raising awareness for hydrocephalus! It’s an incredible milestone. Our WALK program started with one WALK in San Francisco that people joined either by attending or by sending donations to TEAM HYDROCEPHALUS. Today, HA hosts awareness WALKS around the country. The WALK program and our other special events are headed by our very own, Randi Corey, HA’s National Director of Special Events. Her strong leadership has built a solid program with supports built in for our WALK Chairs. As we continue our 30th anniversary interview series, Randi sits down with Amanda Garzon to talk about her tenure with HA and her vision for the future.

Randi has been in the non-profit arena her entire career, starting with fundraising for a college in upstate New York for several years. Since then her experience has been with national, non-profit health organizations. She served as the Executive Director for the Cystic Fibrosis Foundation’s (CFF) Northeastern NY Chapter, as Executive Director of the Juvenile Diabetes Research Foundation’s (JDRF) Eastern NC Chapter which she established, and as State Director for the March of Dimes North Carolina Chapter where she was responsible for a $6 million annual budget and a staff of 54.

HA: Randi, how long have you been with HA now?

RANDI: Believe it or not, I joined HA about 3 ½ years ago. I began as a part-time “consultant” for three months and then was offered the new position, Director of Special Events and Volunteer Support.

HA: What made you decide to accept HA’s offer? Did you have a family member or friend with hydrocephalus?

RANDI: No, I knew no one with hydrocephalus. Actually, I had to look it up before responding about the open position. But, believe it or not, when I worked at CFF, JDRF, and the March of Dimes, I had no personal relationship to any of those missions before working there. Which doesn’t matter – within a few weeks I had dozens of friends with a connection to the mission – the volunteers!

As soon as I met with HA’s CEO, I knew that HA was the right place for me – and that I could make a real difference here. I love being able to see the effect I’ve had on an organization – I enjoy building a non-profit from the ground up (as I did with JDRF) or taking a non-profit that is struggling or trending down and helping turn it around (as I did with the March of Dimes Eastern NC Division.) When I heard about HA and its special event fundraising program I knew immediately that this was a place where my skills and expertise could be used to build and expand the WALKs/SE program. I realized that I had the experience to standardize HA’s WALKs and make it as easy as possible for volunteers to lead successful WALKs. I was excited to hear that HA had amended its mission to include funding research. I was also very impressed that all HA WALKs were 100% volunteer initiated and volunteer-driven. The non-profit health organizations where I had worked had staff coordinating the special events – albeit with a great deal of volunteer assistance. But they were still primarily “staff driven.”

HA: How has it worked out so far? Has it unfolded as you expected or hoped?

RANDI: It’s been great. I love it here and I love my job. I love our volunteers – WALK Chairs, support group leaders, HA Board members – all of them! That’s one of the best things about everywhere I have worked – I’ve worked with some world-class volunteers who are passionate about the mission. And I enjoy working with HA’s other staff members.

The WALK/SE program has accomplished a good deal. When I joined HA it had 18 WALKs raising $488,000. In three years we’ve grown to 32 WALKs in 25 states raising $1.1 million. I had hoped we’d grow a bit faster but, realistically, I also understood that our WALKs are volunteer-driven. We are so fortunate to have so many volunteers willing to step up and take on this commitment. Now, we don’t leave them hanging out to dry! We don’t say, “Oh, great – we’d love to have you start a WALK for us in Anytown, USA – call us after and tell us how it went.” We give our WALK Chairs extensive training and as much support as we can for an organization with only 9 staff members. I’m a big believer in not “reinventing the wheel,” so we provide our volunteer Chairs with everything we can to make their job as easy as possible, from materials to IT support, to documents. Finally, we assign experienced mentors to our new Chairs and the WALK/Special Events staff is always available for advice, encouragement, ideas, problem-solving, etc.

HA: What has been your greatest disappointment?

RANDI: There aren’t enough hours in the day! There is so much more we could be doing but there aren’t enough hours in the day or days in the week to do it all.

I also I think that while we’ve been able to increase the number of WALKs and the total revenue it’s always disappointing to “lose” a WALK site. Because HA WALKs are totally volunteer-driven, if a WALK Chair must step down (for any one of a variety of reasons) we often lose the WALK entirely because we’re unable to find someone to take over that role. We lose between 4-6 sites every year. If we had been able to keep all of the sites we’ve lost in the past three years, HA would have 43 WALK sites right now, probably raising an additional $250,000! That’s a significant amount of money – that buys a lot of research or a lot of program services.

But we understand that “life happens” and all of the Chairs that have stepped down have done so when they had no other recourse…there are many very good reasons for a Chair to step down. We don’t expect everyone will do this forever. But we need to prepare for that. We’re encouraging WALK Chairs to recruit volunteers “in training” for all of our sites, people ready to step up to the leadership role in the future, if need be. Very similar to one’s professional life — as they say, you should always be hiring and training your successor. Then, when a Chair steps down, although the site might take a small step back, it can keep going and we can rebuild. We’ll get there – it won’t happen overnight, however – it can be a real challenge for Chairs to recruit committee members.

HA: Where would you like to see HA’s WALKs/Special Events in five years?

RANDI: In 5 years (or less) I’d love to see HA WALKs/SE double to over $2 million per year with 57 WALKs sites in 37 states. In order to do that, however, we would need to add to the WALK/SE staff, focus on increasing the revenue in our established WALKs and add new sites in states and major markets where we don’t currently have WALKs.

HA: Only 37 states? Why not all 50?

RANDI: While a WALK site in every state may, at first glance, sound like a great goal, frankly some states may not be big enough to support a HA WALK – they may not have a population big enough to make it a viable event. Also, one of the problems with starting a new WALK is spreading the word to the local hydrocephalus community. Due to HIPPA laws and confidentiality issues, people with hydrocephalus and/or their families must be pro-active and contact HA. Unfortunately, HA doesn’t receive lists of everyone diagnosed with hydrocephalus! So unless we can persuade a neurosurgeon in the area where we’re starting a new WALK to help us really promote the event, then finding people with a connection to HA’s mission can be difficult.

HA: Where would you like to see HA WALKs where we don’t currently have one?

RANDI: Oh, let’s see…I’d love to add more HA WALKs to Texas. We have one in Houston but I’d love to hold one in the Dallas/Fort Worth area and one in Austin/San Antonio and maybe in the Lubbock area. Although we have a D.C. event, we should have two in Maryland – one in Baltimore and one in western MD. We should have a WALK in Wilmington, NC, or Charleston, SC – somewhere in the southeastern coastal area. We currently have 2 sites in New York (Long Island and western NY) but I’d love to hold one in Albany and, of course, the Holy Grail, Manhattan, or even Brooklyn. I have a “wish list” of future sites but I am delighted to work with anyone interested in exploring the idea of starting a HA WALK in their community. The area needs to be large enough to support a WALK, it needs to be feasible and it needs to be at least 100 miles or a 2-hour drive from an established WALK site.

HA: Any last words?

RANDI: Yes, thank you! Thank you to our volunteers – our WALK Chairs, our WALK committees, and our event day volunteers – for making HA WALKs so successful. Thank you to our Support Group leaders and all of our volunteers! We couldn’t do it without you!

Thank you to my colleagues for all that they do on behalf of HA and its mission, day in and day out. They’re a hard-working and highly skilled group and HA is lucky to have them.

Thank you to HA’s volunteer leadership for their vision in guiding the future of this organization. HA has so much unrealized potential and, with your continued leadership, it will accomplish its goal.

It truly is a staff/volunteer partnership that makes HA work and I look forward to helping HA maximize its potential in the years to come.

If you are interested in exploring the idea of starting a HA WALK in your area please contact Randi at HA at randi@hydroassoc.com. Or, if your area already has a HA WALK and you’d be interested in “getting more involved” please contact Randi.