Sam Marks literally grew up with the Hydrocephalus Association, as the son of one of our founding members, long-time Director of Support and Education, Pip Marks. As we continue our interview series commemorating our 30th anniversary, Kaitlyn Petronglo sits down with life-long HA community member and conference speaker, Sam, as he shares his unique experience growing up with HA as well as his perspective on living with hydrocephalus and confronting life’s challenges.
HA: How did you find HA?
SAM: My mom helped start the Hydrocephalus Association, along with Emily Fudge, who was the first Executive Director of the Association, and several other parents.
HA: Has HA made an impact on your life?
SAM: Absolutely! I don’t know where I’d be without HA. I have learned a lot about the condition I live with, through the resources provided by HA. It’s also great to have so many connections with others like me, through the fundraising WALK events and national conferences I’ve been to over the years.
HA: What is your favorite HA memory?
SAM: I’ve been to just about every conference and San Francisco WALK event that HA has had, so I’ve got a lot of memories to choose from! I think my favorite experiences have been seeing old friends, and meeting new ones – people who I’ve just met, or that I only see every year or two, but that I have a deep connection with, because of our shared experiences.
HA: How important has laughter and comedy been in confronting the challenges of living with Hydrocephalus?
SAM: I can’t stress enough how important a good attitude is in dealing with any kind of adversity. It’s important to be able to recognize the humor in different situations, and not take things seriously all the time. As you may know, I have done a session at a few HA conferences with Tom Smith, who is a professional comedian and former HA staff member. We talk about what makes humor so important, and how we use it to help in our lives. Those sessions are also some of my favorite HA memories!
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
SAM: To me, providing connections between members of our community – whether it’s between people with hydrocephalus, their parents, or connecting patients with doctors who are experts in their field – is an invaluable part of the work HA has done and continues to do.
HA: Where would you like to see HA five years from now?
SAM: I would like to see everyone who is impacted with hydrocephalus know about HA and be able to use their incredible services. I also look forward to seeing the incredible progress I know we’re going to make in finding treatments, and possibly a cure, through the advocacy that HA is pursuing.
HA: What message do you have for individuals living with hydrocephalus?
SAM: “Keep up the great work!” I have met so many incredible people, throughout the United States and the world, at HA conferences. We’re living our lives, and we’re all doing our part to show that we’re not defeated by this condition. We go through some unbelievably tough times, but inevitably, we find a way to get through it. I’m very proud of our community, and all that we’ve accomplished.
HA: What advice do you have for teens and young adults living with hydrocephalus?
SAM: I know from experience that life is tough when you’re in that strange place between being a kid and being an adult. It’s especially hard when you’ve got a condition like hydrocephalus. The best advice I can give is to never, ever be afraid to ask questions when you’re unsure of something. I’ve had times when I felt like I should have the answer to something, or should know what to do, and I have to remind myself that growing up isn’t about having all the answers, it’s about being able to find them.
HA: What message do you have for the general public about yourself, HA, or living with hydrocephalus?
SAM: I wish the general public knew how similar we all are, whether we have hydrocephalus or not. So many in the hydrocephalus community never expected to be a part of it! Whether you’re a part of our community or not, we all have hopes and dreams, wants and needs, and we all deserve to be treated with respect and dignity.
HA: What message do you have for the staff of HA?
SAM: Thank you for being the net that supports us.
HA: What message do you have for the founding members of HA?
SAM: Thank you. You dared to dream for future generations and planted a seed that has grown into something incredible.