Social Impact Heroes: “How Camille Ruvo and Keep Memory Alive are helping to provide treatment for patients suffering from neurocognitive disorders, like Alzheimer’s, Huntington’s, Parkinson’s, and ALS”
One time at an event, a young woman approached me, who could have been no more than 35. She asked my name and said she had to thank me. She told me she was a patient at the center, which completely dumbfounded me. She proceeded to tell me her story of visiting at least 10 doctors in Las Vegas because she couldn’t afford to travel outside the city. She finally called Cleveland Clinic Lou Ruvo Center for Brain Health and our doctors were able to diagnose and treat her disease. Although they didn’t take her insurance, she was better off financially paying for the treatment out of pocket because she didn’t have to take time off of work, travel out of town, spend money on gas, a hotel, and everything else. Now she’s a young, beautiful woman, and what was hurting her so terribly was no longer affecting her, so she’s able to walk again and go to work every day. She told me her life is back, and that had a great impact on me.
As part of my series about “companies and organizations making an important social impact, I had the pleasure of interviewing Camille Ruvo. Camille is the vice-chairwoman and co-founder of Keep Memory Alive . Keep Memory Alive’s mission is to provide enhanced treatment and ultimately cures for patients and their families suffering from neurocognitive disorders, including Alzheimer’s, Huntington’s, Parkinson’s, ALS and memory disorders of all kinds, by raising awareness and funds in support of Cleveland Clinic Lou Ruvo Center for Brain Health.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
My father-in-law, Lou Ruvo, developed Alzheimer’s and very rapidly deteriorated to the point where he wasn’t even recognizing us when we saw him. You couldn’t find a professional caregiver at that time in Las Vegas, so the brunt fell on my mother-in-law who was still running a restaurant. While she was at work during the day, we would have an old friend of Lou’s come and try to take him golfing. It got to the point where he couldn’t do that any longer, so we started to look for different facilities in Las Vegas that could care for him on a full-time basis. After months of searching, we simply could not find a single place. Most places we found were residential homes that had been converted to facilities for patients with Alzheimer’s that were horribly sad. Unfortunately, my father-in-law passed away before we could even place him. My husband, Larry, and I would have conversations with each other about how we didn’t want to grow old and know that this is all that’s available to us.
A year after Lou’s passing, Larry, some friends, and I had dinner to celebrate and remember Lou’s memory. That dinner led to a little larger dinner the next year, and a little larger the year after that and Chef Wolfgang Puck became involved, and it just organically grew into this amazing fundraising event, and Keep Memory Alive was born. I was working with another charity in Las Vegas at the time, helping them develop a brand and efficient executive board, and ended up becoming their board president. But as Keep Memory Alive continued to grow, I started putting more of my energy into it, so I stepped down from the other charity and took a more interactive role with Keep Memory Alive.
After the facilities we saw when we were looking for a place to care for Lou, our initial plan was to fundraise and build a caregiving facility or a nursing home. At typical fundraising events, you’re loaded down by one speech after another, you get a cheap glass of wine, and a mediocre meal at best. Due to Larry’s position with beverage distributor Southern Glazer’s Wine & Spirits, he had direct access to the best chefs, food and wine, and he understood top-notch hospitality, so we put that synergy to use at our events. As we sat with Lou’s doctors at one of our fundraising dinners, they were amazed by the amount of money we were able to raise in one night. They told us we were putting another band-aid on the disease by building a nursing home and that we were on the path to help find a cure with the kind of money we were able to raise. He saw something that we didn’t see and that’s where things started to take a turn.
Can you share the most interesting story that happened to you since you began leading Keep Memory Alive?
One day comes to mind immediately — I was coming to the Lou Ruvo Center for a meeting and I was on the telephone in my car while in the parking lot. While I was sitting there, I saw firsthand one person after another bringing their patients or loved ones in, and I realized this is not an easy thing. Just getting in and out of a car is a real chore. I can’t imagine what goes on at home in addition to just getting them into the car so they can be on time for their appointments. In those 20 minutes that I was stuck on the phone in the parking lot, I saw heartache at its finest in so many different ways. One man had to get out of the car, open his trunk, open the wheelchair, bring the wheelchair to the passenger side, place his wife or loved one in the wheelchair, close the door, then close the trunk, before he finally could head inside. Then there was a woman who had a hard time finding a parking spot, so she pulled up to the curb. She was a frail woman and she had to get her husband, who was clearly in the later stages of the disease, out of the car and into his wheelchair, leave him on the sidewalk, and then go park the car. These patients are extremely lucky to have people like this in their lives, because not everybody does, but the caregivers unfortunately are the unlucky ones since nobody is caring for them. I was a caregiver for my grandmother and there were times when the phone would ring and I would pray that it wasn’t her, because it might mean that I was going to have to drop what I was doing and go help her. Reflecting back on that moment in the parking lot, I realized this is the unspoken story. People don’t want to say, you know what? There are days when I just want to run and hide and not let anybody find me. But nobody admits this out of the fear of feeling guilty of wanting to care for themselves. At Keep Memory Alive, we focus not just on the patients, but on the caregivers. I really think that at some point, we all need a break, and that’s not weak to admit.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I wouldn’t call them mistakes, it’s a constant education. I learn from every event, no matter how long we’ve been doing it. You’re always educating yourself on what can be done to satisfy the donor better, or what could be done to make an event run a little bit smoother. No matter what angle you take, you’re always learning. I’m sure we’ve had some major mistakes, but I think that’s part of the never-ending cycle in the world of charities when you are asking for favors or relying on people to come forward and help support financially.
Can you describe how you or your organization is making a significant social impact?
The one thing that keeps me motivated is having the ability to help people in need. Before Cleveland Clinic Lou Ruvo Center in Las Vegas, there was nowhere to turn to. Seeing how involved and motivated the doctors are is the stimulation behind wanting to do what we do. I’m proud of the progress that we’re making on these diseases due to the clinical trials we’re able to fund, and expanding the services and range of disorders we research and treat.
Can you tell me a story about a particular individual who was impacted by your cause?
One time at an event, a young woman approached me, who could have been no more than 35. She asked my name and said she had to thank me. She told me she was a patient at the center, which completely dumbfounded me. She proceeded to tell me her story of visiting at least 10 doctors in Las Vegas because she couldn’t afford to travel outside the city. She finally called Cleveland Clinic Lou Ruvo Center for Brain Health and our doctors were able to diagnose and treat her disease. Although they didn’t take her insurance, she was better off financially paying for the treatment out of pocket because she didn’t have to take time off of work, travel out of town, spend money on gas, a hotel, and everything else. Now she’s a young, beautiful woman, and what was hurting her so terribly was no longer affecting her, so she’s able to walk again and go to work every day. She told me her life is back, and that had a great impact on me.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
1. To politicians: improve accessibility to health care. So often I have friends who don’t have neurological problems, but other issues, and they have to wait three months to see a specialist. It should not be that way. It’s not a hair appointment that you have to wait for; your health should not have to wait three months. You also shouldn’t have to pay out of pocket to see a good quality doctor. It should be a human right to see any doctor you feel like.
2. To society: speak up and end the stigma of these diseases. People are afraid of offending somebody. Don’t be. Worry about getting the word out that this is your life and your health matters. When my father-in-law first started acting out of character, we didn’t have Google and I remember thinking, I feel like this is that disease I read about called Alzheimer’s. Back in those days, you relied on your doctor to tell you what was wrong, and when I told my husband that I thought it was Alzeheimer’s, he said we’ll leave it to the professionals to decide. It took another almost 18 months before we got a proper diagnosis. In today’s world, we are so proactive with our own health — we look things up, we read about it, we educate ourselves, and we must continue to do that and speak up.
3. To the community: demand more time from your doctors and educate yourself on health insurance. My daughter is marrying a man who’s doing his residency in internal medicine. These young doctors are educated on what to look for during appointments, but in those quick five minute appointments, it may appear to be a normal conversation with an Alzheimer’s patient who’s in the early stages. It’s not that they’re missing it, it’s just that they don’t have time to diagnose it or spend time talking with patients to really figure it out. People just don’t take the time to understand how insurance works and think it’s this all-encompassing protector. Go and speak with your human resources at your company and ask how to supplement your insurance if something isn’t covered.
How do you define “Leadership”? Can you explain what you mean or give an example?
Remember in elementary school when you had to line up in size order or alphabetical order, and if you happened to be first in that particular order, then you were the leader and everybody followed you? I don’t think being the first person automatically equates to leadership, rather, it starts from being and setting an example. You need to be who you would like other people to be. It’s never one person really running a show, it’s always a combined effort. One person may have the ideas, but as a leader, you’re relying on everyone to lead in their individual ways, all heading towards the same vision. I could speak to the small group of women that work on the advisory board of Keep Memory Alive. Everybody has a role that they fulfill. No matter if that role is small or large, it’s a form of leadership because everybody brings something to the table to create the larger picture. It takes a group and it takes the example for people to want to follow it.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I would love society to start asking more questions about their healthcare and making more demands. You know what you need from your doctor, you’re just not asking for it. If you are sensing something is not right with your health, and you’re not receiving the right answers from the doctor you’re presently seeing and you can’t push them any further, then find another doctor. Don’t let your insurance dictate anything else to you. Same goes for caregivers — if you’re not getting what you want for your loved one from a doctor’s visit, you have every right to demand it for them. I understand sorting through paperwork and making calls can be time-consuming and we live in a society that craves instantaneous results, but we only have one life to live and you must take the time and be proactive with your healthcare. There are limitations to a certain degree through the insurance companies, but you also have a right as a human being to say, I’m not going to take this.
How can our readers follow you on social media?
Instagram @KeepMemoryAlive
Twitter @KeepMemory Alive
This was very meaningful, thank you so much!