Interview with Jacob Landis of Jacob's Ride

Carolyn Smaka: Jacob Landis is a cochlear implant recipient from Maryland and has taken on an interesting mission to help afford others the same opportunity he has had to receive a cochlear implant.

Jacob, welcome.  Tell me about your background, and how this mission to raise money for cochlear implants came about.

Jacob Landis: I am 24 now, and I got my cochlear implant in Baltimore at Johns Hopkins by Dr. John Niparko.  I was born with normal hearing, but I remember losing my hearing as I got older and not being able to hear sounds in my house that my siblings could hear very easily.  I received my cochlear implant when I was ten years old.

I started Jacob’s Ride to raise money for people who need a cochlear implant but cannot afford it.  I am a huge baseball fan and often watch Orioles games in my home state.  I decided to put two of my passions together, baseball and cycling, and try to raise money.  I am making a cross-country cycling trip to 30 baseball stadiums, which will end up being about 10,500 miles.  We’ve set up a Web site for people to donate money as I make my ride, www.jacobsride.com

Jacob Landis on the cover of the Hearing Loss Magazine.

Carolyn:  That’s pretty impressive.  What is your fundraising goal, and how much have you raised so far?

Jacob:  We have raised about $71,000 so far, which is a lot of money for a cross-country bike trip. This is more than a cross-country bike trip, though.  I started in Maryland; I am in California now, and I will end in Miami.  It is almost like a double cross-country bike ride.  We have a goal to raise $1 million dollars and we are still hopeful that our donations will take off as word continues to spread.

Carolyn:  Wow, congratulations on that.  How will this money go to the people that might need it?

Jacob: The money will go to existing organizations that work with people who are candidates for an implant.  You can find the list on our Web site (www.jacobsride.com), but a few of the organizations include Johns Hopkins Hospital, The Gift of Hearing Foundation in Boston, the Hearing Loss Association of America (HLAA) and Mayo Clinic.  These groups are already set up to identify people who either do not have insurance or do not have the means to get the implant.  They are set up to receive the money and allocate it most effectively to help individuals.

In addition to the Web site, we have a text-to-donate number, which allows people to donate money to the Hearing Loss Association of America from their phone.  You can text “Jacob” to 50555, and donate $10 to HLAA.  

Carolyn:  You’re supporting some renowned organizations. Tell me about how you originally came up with this idea.

Jacob:  I have always wanted to give back in some way.  I have been cycling for about three years.  I started by biking to work every day, and I worked up to almost 4,000 miles last year. When the Orioles finally made the playoffs again, it gave me the inspiration to do this.

In thinking about how I could help others to have the gift of hearing, the thought came to me that I could take something I love and turn it into something to help others.  I said to my dad, “What if I did a bike ride to all 30 ballparks?”  My dad went out and started making phone calls and figuring out what we needed to make this a reality.  I still cannot believe I am about halfway to this dream.

Carolyn:  So you had what you thought was a good idea, and you actually got it together to make it happen and are now well into your ride.  What is different from what you expected and what actually has happened?  What has surprised you the most?

Jacob:  I am a little bit surprised that I have been able to make all the miles so far.  I am surprised to have made it to every ballpark, and on schedule, so far. 

The Oakland scoreboard (above) and the Dodger’s jumbotron (below) display messages supporting Jacob’s ride.

Carolyn: Tell me what it has been like to meet new supporters at every game.

Jacob: We have supporters that have come out to every game so far.  I met people who made donations that I had never met before.  It is pretty cool to be surrounded by people who understand where we have come from and what others with hearing loss have been through. 

I have met people from the ages of 2 up to 60 and older at the ballparks.  On the East coast, we had a tremendous number of people come out.  In Boston, we had 150 people alone.  I have met a lot of small children with cochlear implants.  I also visited the DePaul School for Hearing & Speech in Pittsburgh and Northern Voices in Minneapolis.  These are schools that are set up for kids with cochlear implants to get them ready to go back into mainstream schools.

I have been trying to tell those kids something that I learned as a child. They have to understand that they are different, and they should not focus on trying to fit in and be like everyone else.  When I was in high school, I spent a lot of time ignoring the problems I had and not fully developing like I should have during that time.  I pretended that I was like everyone else.  I tell the kids that they should surround themselves with people that make them feel happy for who they are, instead of pretending to be like everyone else.  

Jacob with Los Angeles Dodgers’ pitcher Chris Capuano.

Carolyn: That’s good advice.  Someone reading our interview might think, “Aren’t cochlear implants covered by insurance, and if you do not have insurance, aren’t they covered by Medicaid?”  Why is there a need for financial assistance for cochlear implants?

Jacob: I know when I received my implant in 1999, it was not a covered expense under my father’s insurance plan.  It was still seen as an experimental surgery then.  Everything was out-of-pocket, and he had to reach deep into our savings to cover the cost.  Today, insurance companies are much better about paying for implants, but they are not always covered.  And with the economy and insurance plans changing, many families have a high deductible that they have to meet, and it is difficult to pay it all at once.  Some kids get two cochlear implants, and often not even in the same year, so families have to pay their entire deductible two years in a row.  Medicaid and Medicare will only provide coverage for one implant, and Medicaid will not cover CIs for anyone over the age of 21.  Some people don’t have insurance but don't qualify for Medicaid either, and they cannot even begin to afford the $50,000 to $100,000 price tag for a cochlear implant.  

The rehab that goes with implants is also expensive, and sometimes it is not covered by private insurance or even plans under Medicaid.  So speech therapy that kids need after the implant can be an out-of-pocket cost for families.  FM systems or other accessories that can make an implant user most successful are usually never covered by insurance or Medicaid.  So, all the costs associated with getting a cochlear implant are not always covered one-hundred-percent.  Even with insurance, the costs can be really high.

Carolyn: Can you tell me about The Dylan Challenge?

Jacob:  Sure.  When I set out on this ride, I knew we would have to enlist help to raise $1 million dollars.  Shortly after I got started I met Dylan Boehler.  He’s a nine-year-old baseball fan who just received a cochlear implant last year.  He wanted to help raise money, and with some help from his parents, he raised $650 in about a week.  I was so impressed.

The Dylan Challenge

We have issued a challenge in Dylan’s name to do what he did.  You can sign up through jacobsride.com under Get Involved, and we will send you a kit to help you collect money in a jar or can.  The person who raises the most money for The Dylan Challenge will earn a trip for two people to Miami for the ride finale in September.  Second place wins a kid’s bike, and third place wins Jacob’s Ride memorabilia.  The Dylan Challenge is a great way for people to get involved and get the word out in their communities. 

Carolyn: It is great to see such grassroots support!  Has the ride changed you at all, and what are your future plans?

Jacob:   It has definitely changed me.  I think I have matured so much during this time. I absolutely want to stay active in helping people with hearing loss. I’m thinking about organizing some bike rides for hearing loss, similar to the walks for hearing, as a way to keep donations coming.  There is not the kind of momentum at the national level for cochlear implants or hearing loss, as compared to what we see for other issues. This is surprising to me because hearing loss is such a widespread issue.  It affects almost 50 million Americans in some form or other. 

I have also thought about doing something next year like a cross-country bike trip with a group of people, maybe all of us having cochlear implants.  There have been people who have expressed their interest in riding with me on this ride, but they can’t ride 10,500 miles, so I would like to do something where more people can be involved.

When I get back home after the ride, I will go back to work and pick up life where I left off.  I love riding, and it will always be something that I continue, but one thing at the top of my list is getting a car!

Carolyn: We wish you all the best on reaching your goal, and for a great rest of your ride.  Thanks for your time today, Jacob.  It has been wonderful talking to you.  We encourage readers to visit www.jacobsride.com and show their support by making a donation, taking The Dylan Challenge and/or helping to spreading the word!