As we continue our interview series commemorating our 30th anniversary, this week Kaitlyn Petronglo sits down with former Hydrocephalus Association (HA) Board of Directors member and lifelong hydrocephalus advocate Mark Geiger. Mark was diagnosed with hydrocephalus as a child and has undergone five shunt surgeries over his lifetime. He has made raising awareness and funding for hydrocephalus his life’s work, dedicating his time professionally as well as running marathons recreationally to raise awareness and support for the cause.
HA: How did you initially find HA? And in what capacity did you get involved?
MARK: I found HA through my pediatric neurosurgeon, J. Gordon McComb from Children’s Hospital of Los Angeles. I was entertaining the opportunity of doing my own Hydro Newsletter and Dr. McComb suggested I reach out to HA to see if I could add value to their existing effort. I ended up getting a job for a shunt company, Medtronic PS Medical (Santa Barbara, CA) out of college and again in 1996 and worked for/with them in Marketing and Sales for ten years. As Director of Marketing I was asked to join HA’s Board of Directors and served for six years in that capacity.
HA: Has HA made an impact on your life? If so, how?
MARK: The HA is a very special group of people to say the least. While most overcoming-the-odds stories credit standing on the shoulders of giants, this success story was sparked in large part by a tiny, passionate, tough, outspoken woman and mother of a child with hydrocephalus, Emily Fudge. Her contribution cannot be over-stated and is an inspiration to us all. Her “way” of crystallizing the thoughts of many and getting people motivated to help is legendary. She was fiercely driven by the tremendous burden every parent of a child with hydrocephalus has and she put it into words that I’ll never forget: “You needed us and we didn’t always know how to help you.” I can only fully appreciate Emily’s cause now, with two children of my own.
HA: What is your favorite HA memory?
MARK: One of my favorite parts of the HA conferences was facilitating some of the patient sessions. Many patient accounts began with “I wasn’t supposed to survive” or “my parents were told I would be severely deformed with a terrible quality of life” and these same patients were leading their high school classes in academics, involved in school activities, donating their time in the community, and making a difference. I remember being in awe of many of these young, inspiring people, and while the effort was emotionally draining you always left the conference on a “high.”
HA: What prompted you to start running marathons? How has having hydrocephalus affected (if at all) your ability to compete?
MARK: I’m not what anyone would call a runner. Another HA Board member at the time, Emily Clark Farrell who also has Hydro, asked me / dared me to run the Maui Marathon with her to raise money for the Hydrocephalus Association. I had run some 10Ks (6.2 miles) prior, but certainly not 26.2 miles. Emily dropped a challenge, with the rest of the board egging us on, and I agreed. I don’t think anyone believed I would really do it and Emily Fudge called me a week later saying, “I’m putting this in the HA newsletter so you back out now or your in all the way.” If you know either Emily, you know it’s impossible to say “no” to them. Shortly after the call I bought a book on marathon training and called every runner I knew to get advice. I remember we raised over $20k and, on that hot and humid Maui day in August, we did it. I vowed not to run in weather that hot and humid again, so the next marathon was the Chicago Marathon.
I’m very lucky in, that, hydrocephalus has not yet impacted my ability to play sports or run. That’s my own personal opinion. Those of you that have seen my golf swing might differ.
HA: How effective do you think the sport of running is in empowering and motivating people to support a cause?
MARK: Training for a marathon is one of these best ways to raise money. Everyone wants to talk to you about the 4-5 months of training and, during the course of those conversations you always get the opportunity to talk about why you are running. I’ve supported friends raising money for other charitable organizations in the same way.
HA: Have you participated in an HA WALK? Do you have any favorite memories to share about a WALK event?
MARK: I’ve participated in about five HA WALKS, most of them on Angel Island in San Francisco. I brought my unicycle one year and did five miles on it. It sounded like such a cool idea but I was less than enthusiastic about the choice after mile three of five. Some of the kids thought it was fun.
HA: What were some of the challenges HA has faced and how did you overcome them?
MARK: HA had patient advocacy nailed but there were a number of other hydro-focused groups around the nation without one cohesive brand. Most notably, Jim and Dory Kranz led that effort for a united front and I believe it was a great success. Hydrocephalus research was another area that needed a voice, and passionate leaders like Paul Gross got involved to drive that forward with the help of the HA Medical Advisory Board. The world needs a better way to treat Hydrocephalus and while I’m very sensitive to all the technical strides the shunt companies have made over the years, shunt technology has not changed dramatically in 50 years. The major challenge is that hydrocephalus is not like heart disease or Alzheimer’s Disease with millions of people affected. The patient population does not support millions of dollars in R&D investment because the return on investment is simply not there. As a result, this market is forced to limp along with small, incremental shunt improvements and it breaks your heart. I had five shunt surgeries but that’s nothing compared to some hydrocephalus patients.
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
MARK: Patient advocacy and research.
HA: What else would you like to see HA do?
MARK: Fund research.
HA: What message do you have for individuals living with hydrocephalus or their family/caregivers?
MARK: Connect with other patients through HA conferences and events. “To strive, to seek, to find, and not to yield.” – Tennyson
HA: What message do you have for the general public about HA or individuals touched by hydrocephalus?
MARK: Get involved. Think of it this way….anyone can make a difference. “Why not me? Why not now?”
HA: What message do you have for the staff of HA?
MARK: How do you say “Thanks” in a meaningful (enough) way to the folks who get up every day to go to work and help people. They get buried with calls from desperate parents who need to talk to someone who understands them. When I was going through tough times with shunt surgeries in the 80’s there wasn’t a great deal of information available. My father spoke to a customer service person at one of the shunt companies and asked him if he could recommend a pediatric neurosurgeon in Los Angeles. The person replied, “I’m not supposed to give recommendations, but if it was my kid I’d go to Gordon McComb at CHLA.”
HA: What message do you have for the Board or the Founders of HA?
MARK: I firmly believe that an effective treatment for hydrocephalus will come as an adaptation of some other, already available technology in larger unit volume clinical applications like those in the interventional coronary and peripheral space. This is where the research needs to be focused and research needs to be a core value of the organization. That’s my opinion and we know opinions are like a hole in your head….every cool person has one.
HA: You mentioned that you would like to see HA begin to fund research. How would you like to see HA develop over the next five years so that it may ultimately meet this goal?
MARK: HA needs to do three things:
1) Raise enough money to make a difference in the area of research that translates into meaningful new product development that larger companies won’t touch because of risk. The innovations will likely be the adaptation and miniaturization of technologies already developed for other areas around the body.
2) Build up the Gerard Swartz Fudge Scholarship fund to offer hydrocephalus patients pursuing post high-school education a significant chunk of money with a bent toward biomedical engineering. These are the great minds of the future that may cure this disease and, because they have skin in the game, they’ll not stop until they do.
3) Push the FDA to be more accommodating toward new hydrocephalus therapies. It’s a small number of patients compared to coronary artery disease, cancer, and Alzheimer’s Disease, but the cost to the healthcare system and personal suffering impact is staggering. In the past the FDA has produced a list of all the 510(k) approvals for hydrocephalus products, and it looks impressive until you look at the detail that shows the approvals are for very small shunt design changes that have almost no significant impact on outcomes. As it stands, we are all stuck with very small, incremental changes in shunts because no company will approve a 10-year return on investment.