Thinking About Starting a Hydrocephalus Association (HA) WALK? My Experience Chairing a New HA WALK!

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By Rachel Inskeep, Chair – 2011 Inaugural Wichita WALK for HA

Hello prospective WALK chairs!  My name is Rachel Inskeep from Wichita, KS.  I am 35 and I work full time as a registered respiratory therapist at a local hospital.  My husband and I have been married for 8 years; we have a 15-year old son from his prior marriage (living with us full time), a 6 year old daughter and a 4 year old son – who has hydrocephalus.  We found out about his hydrocephalus at my 18 week sonogram. Needless to say, as I am sure some of you experienced, the rest of my pregnancy was full of worry, wondering and prayer that our sweet baby boy would be okay.  This led to my first introduction to HA – I called the HA office and spoke with a very kind lady who talked to me and sent me information.  Fortunately, due to a small change in his CT scan, my son didn’t require a shunt until he was 7 months old.  He is now doing well and we are so proud of him!

I always knew I wanted to do something to help others living with hydrocephalus – I just didn’t know what to do or where to begin.  In the spring of 2010, I received a letter from a volunteer who was looking for help to start an HA WALK for Kansas.  I contacted her but then heard nothing for several months.  I contacted Rand Corey at HA to find out if a Kansas WALK was still in the works.  It turned out the original volunteer was unable to start the WALK due to health problems.  Randi asked me if I might consider doing it?  I thought about it …and thought about it some more, but I was scared to start something and then not succeed.  I didn’t want to disappoint anyone.  Well, I finally decided just to do it!  I am so glad I did, the joy and happiness and all the other emotions I experienced that day made it all worthwhile!!
Last October was our first WALK in Kansas and for a first time event I’d say we did pretty darn awesome! (HA Note:  We agree with Rachel – the Kansas WALK was awesome!) With that said, here are some tips I would like to share with anyone who is considering starting an HA WALK.

RECRUIT HELP!  If you can, recruit a Co-Chair – it will be very helpful. (My mom is Co-Chairing with me this year – I’m very grateful for that because my mom is on top of it!) When we started it was just my Mom and I, with a few close friends and family members, who did everything!  I didn’t have a committee in the beginning because I didn’t know anyone in the hydrocephalus community – or where to ask for help.  Along the way I was referred to several local people who I contacted.  We started holding meetings at least every other month just to share ideas and talk about what had to be done.  That was very helpful because you never know “who knows who” and what ideas people may have!

For sponsorship, try to get people to help with follow up calls to places you asked for sponsorship.  Although it can be done by one person (I did it all last year) it is a chore for one person.  Just make it as easy on yourself as you can.  Ask everyone you know if their employer would be interested in sponsoring the event.

We also held several smaller events to help raise money: a garage sale/bake sale, ladies day out which offered different vendors, Sonic night and some others.

NO NEED TO REINVENT THE WHEEL!  The HA staff are there any time — and I mean any time — you have a question or a problem, so never hesitate to contact them, via phone or email.  They will promptly address your concerns!  You will receive a WALK Chair’s Manual which contains everything and anything you need to run a successful WALK.  If you follow it, with help from Randi and Jordan, YOU WILL BE SUCCESSFUL!  Also, there is a private group on Facebook for HA WALK Chairs to connect with each other – and we’re all there to help you with whatever we can!  It helps to talk to people who have been there, done that!  Don’t ever hesitate to ask questions, no matter what they are!  Don’t feel uneasy about it, there is never a stupid question!

If you do decide to take the leap and do this, the first order of business is to ask family and friends to help you.  The second is to find a location and choose a date. (Randi and Jordan will send you a list of what you need in a site.) We held ours at a county park last year and will go back there again this year.

I hope that you will find my experience helpful.  I was in your position just last year (thinking about starting an HA WALK) — boy, have I learned a lot!  I never thought I could do something like this – but I did – and SO CAN YOU!   I hope you will seriously consider this awesome opportunity to be a leader in your community and the hydrocephalus community!  Currently the WALKs bring in almost half of HA’s annual revenue.  And it’s used to fund research, education, support and ONE DAY TO FIND A CURE!  Thank you for taking the time to read this!  If I can help you with anything, please don’t hesitate to contact me! GOOD LUCK TO YOU ALL!

4 Comments for : Thinking About Starting a Hydrocephalus Association (HA) WALK? My Experience Chairing a New HA WALK!
  1. Reply

    I live in south Jersey with a son who has hydrocephalus and other problems and has had over 74 brain surgeries and is only 6. I would like to try and organize a walk in south Jersey since it seems only one has been held in pass few years. I don’t know how to start or what to do can anyone help me in this process.?

    Passed on to Randi. TGS 3/5/2012

    • HydroNashville
    • February 12, 2012


    Great story, and very encouraging. I am so excited to be the Nashville Chair along with my best friend and co Chair Melissa. We are excited to hit the ground running on the Inaugural Nashville Walk.

    • Jenifer Jeans
    • February 6, 2012

    Very well written!! I am so proud of you!!!

    Jeniifer Jeans
    Walk Chair – Middlebury CT Hydrocephalus Association Walk.

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