The Hydrocephalus Association (HA) is extremely proud of its volunteer driven WALK and special events program, as well we should be. Thanks to our 57 WALK Chairs, in 28 states and the District of Columbia, over $1 million was generated to support HA’s program services (support, education, advocacy) and research the past two years.
In 2012 more than 10,000 people participated in HA WALKs in one of our 31 WALK sites and the Virtual WALK. These are all great statistics.
What else do HA WALKs do? They do increase awareness of hydrocephalus and HA – helping HA spread the word about this complex and complicated condition affecting more than 1 million Americans. That, too, is an important function of the HA WALKs and special events.
But there is another side of the WALKs that I’d like to mention.
It’s not unusual for families to travel to participate in a HA WALK. Most of the families participating come from within a 100-mile radius (or two hour drive) of the WALK site. But we’ve had families travel much farther – in Florida we had a family drive for 7-hours to attend the South Florida WALK. In New Mexico we had multiple families travel 3 or more hours to attend the WALK. One family traveled 9 hours to attend the Atlanta, GA event. In other sites we have families traveling 5 hours, 4½ hours, 175 miles, 229 miles….I could go on and on. (Please note: this list does not include someone who traveled coast to coast to participate in a friend’s event or someone who happened to be there from out of town.) Why are people willing to travel like that to participate in a HA WALK? I can’t imagine it’s because the trip is “fun.” (Anyone who has taken a long car trip with two or more children and/or pets, strollers, diaper bags, snacks, etc. knows that the trip itself is probably not fun.) So, no, we can’t assume that the trip itself is fun.
Hundreds of families across the country are willing to travel a long distance to attend a HA WALK to make a connection. To make a connection with another family who is “walking in their shoes” (no pun intended.) A teenager with hydrocephalus may be actively seeking to connect with another teen with hydrocephalus. A family is searching for another family with a child with hydrocephalus around the same age of their child, someone who has some of the same issues they have, someone who understands “what it’s like.” They want to make a connection with others in the hydrocephalus community. That is why we distribute bandannas to hydrocephalus patients at the WALKs – to facilitate making those connections. Anyone who is willing to self-identify as having hydrocephalus can make it easier for others to find them and/or for them to find others. Those who don’t wish to self-identify as having hydrocephalus, don’t need to – they can either not pick up a bandanna or they can tuck it out of sight in a pocket or handbag if they choose. It’s strictly voluntary.
Making these connections is difficult at best in those places where HA does not currently have an established support group. (Although our network of support groups is growing, at this time the number of active HA volunteer-coordinated Support Groups does not yet cover 5% of the U.S.) Even in an area that does have a support group, there are many who don’t attend support group meetings for a variety of reasons: the day of the week or time of day it’s held, it’s focus is pediatric or NPH, it’s difficult to get to, they don’t think they have much in common with other support group members, etc., etc. While they don’t get out to a support group meeting, they will make a concerted effort to get out on that one day of the year – HA WALK day.
The HA WALK is even more important for those newly diagnosed families – those parents who are “new” to hydrocephalus and are looking for hope, looking for reassurance, looking for hints, tips and practical advice. And because the WALK is held once a year some of those families may have to wait months and months for the WALK date which they are eager to attend – especially in those areas without support groups.
At any (and every) HA WALK you’ll see people exchanging phone numbers, email addresses, comparing notes…making those connections within the hydrocephalus community. And with today’s communications it’s not nearly as important that a family lives specifically in your town or community. So if a family that you connected with lives 2 hours from you, distance is much less important than it used to be.
So while raising money is a major component of HA WALKs, it isn’t the only reason for holding the event. (We do encourage everyone attending to raise money from family and friends but we don’t require a minimum to participate.) There are many other important reasons for HA WALKs.
If you are interested in holding a HA WALK in your community HA will teach you how to do it – please contact Randi Corey at firstname.lastname@example.org. Thanks!