Looking Back…Moving Forward: Hydrocephalus Awareness, New York Style!

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Mia and Tyler Padron, hydrocephalusNever underestimate a New Yorker on a mission…or get in her way! 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 Long Island WALK Co-Chair, Mia Padron. Mia’s son, Tyler, was born with hydrocephalus, but not diagnosed until he was 23 months old. Those 23 months were emotionally taxing, as Mia instinctively knew something was not right, despite Tyler’s pediatrician advising her otherwise. Once Tyler was diagnosed and treated, Mia decided it was time to raise awareness of hydrocephalus and the necessary funds to find a cure.

Mia and her WALK co-chair, Jackie Davidson, met eight years ago when Mia attended her first WALK. Jackie’s son, Jordan, also has hydrocephalus, so the two moms found a shared commitment for awareness, support and advocacy. In 2009, the two took over as chairs for the Long Island WALK, one of the most successful events for HA, last year raising over $71,000. They also currently co-lead the Long Island Community Support Group with Andrea Moore. But Mia does not stop there. For the past 5 years, Mia has worked with New York State Senator John Flanagan to pass an annual state resolution declaring September Hydrocephalus Awareness Month for the State of New York. She also leads the annual Kids to Cure Hydrocephalus event at Eugene Auer Elementary School, currently entering its third year. This year, a second school on Long Island will potentially also host a Kids to Cure Hydrocephalus event. In our interview, Mia shares her rich experience leading an HA WALK and her thoughts about the Hydrocephalus Association.

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

MIA: I found HA through my son’s surgeon. The first booklet about hydrocephalus he handed me was HA’s “About Hydrocephalus – A Book for Families.” That was where I first learned about hydrocephalus, a word I had never heard before. Then I called the Hydrocephalus Association office and spoke with Pip Marks, who handled support and education. She was great – she made me feel as if I wasn’t alone any more. None of us start out knowing anything about it.

After realizing my son’s condition was a lifelong condition with no cure, I decided I needed to be involved to help make a difference for tomorrow. I wanted HA to find a cure and I knew that I was willing to use every talent I had to do that.

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

MIA: The WALKs raise an amazing amount of awareness, especially within the hydrocephalus community. The mission-connected families look forward to it every year. They look forward to being with other people “like them,” whether they’re an adult or a child – someone who knows what it’s like to have hydrocephalus. At the WALK they don’t feel alone; they feel part of something bigger

HA: What do you like best about chairing a WALK/what do you like least?

MIA: The best part of chairing a WALK is the families; getting to know them and knowing what it means for them. I love being part of that and the feeling of being there to help others. I know the WALK helps them feel that they’re not so alone.

My least favorite part of chairing a WALK isn’t that it’s a lot of work, although it is. I would say it is the endless hours of data entry after the walk and securing all the day-of necessities. The end product makes all of the hard work worth it, though.

HA: How does your child feel about your serving as a WALK Chair?

MIA: I just called my 11 year old son, Tyler, over and asked him that question, and he said, “Cool.” I think what he was trying to convey is that he loves the event. He loves WALK day – because it’s his day and a day for everyone else with hydrocephalus. He loves being with the other kids with hydrocephalus.

HA: How do your families feel about your serving as a WALK Chair? They, too, sacrifice for the WALK.

MIA: They DO sacrifice a lot and I am very thankful for their understanding, because chairing the WALK does take a lot of time from family. But they’re right there with me, supporting me and working on the event with me. If I didn’t have their support, I couldn’t do it.

HA: Does your family volunteer and/or help with the WALK?

MIA: Absolutely! They’re my top volunteers! They volunteer, they get their friends involved, they get the community service organizations at school involved, and, the day of the event, they are working as hard or harder than any other volunteer on site.

HA: What is your favorite WALK moment or memory?

MIA: It was 2010; the WALK’s fifth year. That year the WALK more than doubled in number of walkers and revenue. My co-chair and I were getting ready to start Opening Ceremonies and we looked out at this huge crowd, with people still standing in line to sign in. It was an emotional moment seeing all of the participants and remembering how far we had come in the past five years. That was the year we “outgrew” our location.

HA: What is the hardest hardest lesson you’ve learned running a WALK?

MIA: The hardest lessons I’ve learned is that you can’t start too early! This is not something you can put together in a few weeks. As it’s grown, it’s become a year-round event. The day after the event I’m already thinking about ways we can improve it, refine it. I’ve also learned that you have to work it – constantly. You can’t take anything for granted…you can’t sit back and hope it will all happen. It just doesn’t work that way. You have to make it work.

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

MIA: I would love to see the hydrocephalus community celebrating a cure! And that HA would only be needed for support and education. Whether that could happen in five years is doubtful, but I’d love to see it!

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

MIA: They are a tremendous support system for all of us living with hydrocephalus. I want to thank the HA staff for all their support over the years. It is impossible to do what we do without them.

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

MIA: My hope is for them to continue getting the HA name known globally. There are too many people suffering with hydrocephalus and they are not aware HA is here to help.

HA: What message do you have for the founding members of HA?

MIA: I am so grateful to them for starting the Hydrocephalus Association – taking those first steps that has brought HA to where it is today. This organization has grown so much in its 30 years – from being a small group of volunteers helping support other families to the largest non-profit dedicated to hydrocephalus in the U.S. Although HA hasn’t stopped supporting families, it now also funds research and I think it is poised for tremendous growth over the next few years.

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