Looking Back…Moving Forward: Fresno Says YES to Our Hydrocephalus WALK

This year the Hydrocephalus Association (HA) commemorates our 30th anniversary but did you know that this year our San Francisco WALK will celebrate it’s 20th WALK event?  In 1994 a small group of dedicated people affected by hydrocephalus gathered to walk across San Francisco’s Oakland Bay Bridge. Their purpose: to unite the local hydrocephalus community to raise awareness of this life altering, potentially life threatening condition and to raise money for the Hydrocephalus Association’s education and support services. As part of our interview series commemorating our 30th anniversary,
this week Randi Corey, our National Director of Special Events and Volunteer Support, sits down with Cheryl Merrell, our HA WALK Chair in Fresno, California, to talk about volunteering for HA, starting and chairing a HA WALK, and other thoughts about the organization. Cheryl’s daughter, Lauren, has hydrocephalus. During Cheryl’s tenure as Chair/Co-Chair for HA’s Fresno WALK, the event has raised almost $100,000! Special thanks to Cheryl for sharing her thoughts with us.

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

Cheryl Merrell, HA’s Fresno WALK Chair

CHERYL: I found HA online while I was in my daughter Lauren’s hospital room after her 6th surgery in one year. I was losing my mind…and losing hope. I couldn’t perform neurosurgery, I couldn’t engineer a new treatment option…but maybe I could help find others who could do those things! Starting and working on the HA WALK was a good way to become more proactive and “fight back” so that I didn’t feel like I was just letting this happen to my family but that I was going to try to be part of the solution!

HA: 2013 will be the 5th HA WALK you’ve chaired or Co-Chaired for HA. What is your favorite WALK moment or memory?

CHERYL: My favorite WALK moment was at our first event when I realized hundreds of people had come! Going into it I knew I would be there and my family would be there – although I hoped others would, too, I didn’t know for sure!

HA: What do you think HA WALKs do for the hydrocephalus community?

CHERYL: HA WALKs give the families hope. They also provide the local hydrocephalus community with an opportunity to share their stories. Our families pour their hearts into Ambassador Avenue! [Editor’s note: Ambassador Avenue is a part of most HA WALKs – it’s a very special section of the WALK route, lined with posters made by mission-connected families. Each poster tells their family’s story using photos and other visual mediums.]

HA: What do you like best about leading a HA WALK? And, to be fair, what do you like the least?

CHERYL: What I like best is feeling that I am part of the solution; I’m not just standing on the sidelines as Lauren undergoes surgery. It makes me feel that I’m truly making a difference. What I like least….the data entry (ha, ha!) I’ve talked my husband into taking that over this year!

HA: The hours you spend on coordinating the WALK and all of your hard work for HA often require sacrifices on the part of your family members. How do they feel about your serving as a WALK Chair?

CHERYL: The first year my family thought I was nuts. Now they are used to it and are totally onboard! My daughter, Lauren, was a sophomore in high school when I first started the HA WALK in Fresno and she didn’t want anyone to know that she had hydrocephalus. She didn’t want anyone to think she was different from everyone else. Although she volunteered at the WALK, she didn’t share her condition with anyone. Now that she’s in college that has changed. She called me yesterday to say that she had sent an email to the editor of the Fresno Bee newspaper, offering herself as a human interest story. They accepted and the piece will run the week before the WALK!

HA: You mentioned your daughter volunteered at the WALK. Do other family members volunteer or help with the event?

CHERYL: Our entire family volunteers. Lauren handles putting together the balloon arch and talks to other families. My son Alex handles registration and hands out ribbons at the finish line. My husband sets it all up with me and this year will take over the computer work. Our best friends and our children’s friends are all there to volunteer by handing out coffee, distributing T-shirts…it’s AMAZING!! And my fabulous co-workers walk as a team…it is wonderful.

HA: What’s the hardest lesson you’ve learned about coordinating a HA WALK?

CHERYL: To start early…and to think of this as an ongoing project!

HA: What message do you have for HA staff and volunteer leadership?

CHERYL: For the founding members of HA – bless you!

For the HA Board of Directors – Find us new treatment options! Why can’t a shunt have a computer chip that would help pinpoint shunt problems? Network with everyone you can. Please make hydrocephalus and HA as well-known as autism, muscular dystrophy or cerebral palsy!

For the HA Staff  – I can’t thank you enough for all you do. You all realize that, in addition to chairing the WALK, I work full-time and have a marriage and kids. One with too many surgeries!! You are so very patient with me as I get this job done. I truly appreciate you!!!!

HA: Where would you like to see HA in five years?

CHERYL: In five years I would like hydrocephalus and HA to be a household word!