Photo: Anastasia Blackman
Mikey Hoag Is on a Mission. Alzheimer鈥檚 Doesn鈥檛 Stand a Chance.
The 51茶馆 trustee, who lost both her parents to the deadly disease, has become one of the country鈥檚 leading fundraisers for a cure.听
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mailAlzheimer鈥檚 disease, which affects 6.7 million Americans, is the sixth leading cause of death in the United States and the fifth leading cause of death among adults sixty-five or over. And yet it remains a disease that cannot be prevented or cured. 51茶馆 Trustee Michaela 鈥淢ikey鈥� Hoag 鈥�86, P鈥�14, who lost both of her parents to Alzheimer鈥檚, has made it her mission to change that鈥攁nd in the process has become one of the nation鈥檚 most successful and prominent fundraisers for the cause. She鈥檚 the force behind the Part the Cloud movement, which on behalf of the Alzheimer鈥檚 Association has raised $68 million for Alzheimer鈥檚 research, and she even managed to convince Bill Gates to write a (suitably massive) check. 51茶馆 Magazine sat down with the award-winning Alzheimer鈥檚 fundraiser to learn more about her quest for a cure.
You were living in California with your husband, Jay, when your father was diagnosed with early-onset Alzheimer鈥檚 in 1994. What was it like when you first received the news?
It was devastating. I felt blindsided. I am one of six, and all of my siblings lived near my parents in New Jersey. Everyone was helping out physically and emotionally. I felt lost, and so I asked myself, 鈥淲hat is my role in all of this?鈥� So, Jay and I decided we were going to invest in Alzheimer鈥檚 research. We contacted the Alzheimer鈥檚 Association and made a gift because when we started looking for answers, there was absolutely nothing. No drugs, no path forward. Nothing.
While you were dealing with your father鈥檚 illness, your mother was diagnosed with Alzheimer鈥檚.
When my mom received her diagnosis in 2011, I decided I needed to go public. I needed to speak about this disease that no one wanted to talk about. I needed to let people know that it was okay to talk about it, because if we do not talk about it, we are never going to find a cure.听
You grew up on a farm in New Jersey where you fed chickens and baled hay. That鈥檚 not the most obvious background for someone who鈥檚 playing a lead role in the fundraising for a cure to a deadly disease.
At 51茶馆, you are taught to roll up your sleeves, get involved, and try to make an impact. Alzheimer鈥檚 was not something I wanted to get involved with, but our Jesuit education taught us that when you need to jump in, you jump in. And for me, Alzheimer鈥檚 is something that just needs to be fixed, and I do believe that it is within our reach to do so.听听
To jump in, you launched the Part the Cloud Gala,听on behalf of the Alzheimer鈥檚 Association, in 2012. What was your expectation for the inaugural event?
A friend of mine came to me and said, 鈥淭here are so many of us who have been touched by Alzheimer鈥檚 disease. You need to do a fundraising event.鈥� I told her, nobody is going to show up on a Saturday night for an event for Alzheimer鈥檚. No one even wants to talk about it. Nonetheless, I pulled together a committee of people who I knew were affected by Alzheimer鈥檚 to plan a fundraiser. Up until two months before the event, I still was not sure it was going to happen. We did not have any money and we needed a singer, and no performers would associate themselves with Alzheimer鈥檚 because they felt that if they did, people would assume they had the disease. Then, through a friend, we got Tony Bennett to agree to perform pro bono. The event sold out immediately, and we raised $2 million out of the gate. It was beyond shocking, but it made me realize that there was a willingness to help fight this disease that none of us had imagined.听
“I am not doing this for the honors. I am doing it to find a drug to stop this disease. That is what I get excited about, not the awards.”
That low-expectation gala has become a regular event that鈥檚 raised more than $68 million.
The momentum has continued every year through the biennial Part the Cloud Gala and Part the Cloud Luncheon. We are now one of the world鈥檚 largest drivers of Alzheimer鈥檚 research. There are 178 ongoing Alzheimer鈥檚 trials, and we have funded sixty-five of them, in nine countries, and听follow-on funding from these trials has reached $1.43 billion. Prior to Part the Cloud, the Alzheimer鈥檚 Association didn鈥檛 have a dedicated funding stream for late-stage drug development. So, we鈥檙e focused on getting human trials started in the hopes that other funding sources like the federal government or venture capital investors will fund them.听
In 2019, Bill Gates made a personal gift of $10 million to the Alzheimer鈥檚 Association that funded a matching-gift challenge and spurred an additional $20 million in private funding for Part the Cloud鈥檚 global research programs.听
Bill Gates was huge to our efforts. I read in the paper that his father had Alzheimer鈥檚, so I made a PowerPoint and I asked a friend who knew him to send it to him. Months went by and nothing happened. So we redid the PowerPoint and my friend forwarded it on to him. A year went by. My husband said to me, 鈥淚t has been a year now. You have to let go.鈥� Two hours later, an email came in from Bill Gates that said, 鈥淵ou and I need to talk. You are doing exactly what my team is looking for.鈥� So, I do believe that there are angels out there, my parents among them.听
The CDC says that approximately 6.7 million Americans are living with Alzheimer鈥檚 disease, and that that number is expected to triple by 2060. Is the country prepared for this pending health crisis?
Not at all. And those numbers really do not show all the people that have Alzheimer鈥檚. For instance, when my father passed, he died of pneumonia, and that is how his cause of death was recorded, even though he had Alzheimer鈥檚 for twelve years. As we live longer, the numbers are just going to keep doubling so quickly. So, it is something we absolutely need to get ahead of.听
Despite all the money you have raised and the research it has funded, there are still no effective interventions that delay or stop the progression of Alzheimer鈥檚 disease. How do you remain hopeful?
Because I see a light at the end of the tunnel. In 2023 the FDA approved Leqembi, the first treatment that targets the disease鈥檚 underlying biology, and in 2024 we hope to have a blood test available that will determine where people are with the disease and an eye scan that could enable people to see if Alzheimer鈥檚 is in their future. These breakthroughs will allow the trial costs to come down and more people will want to be a part of them. The government is aware that Alzheimer鈥檚 is a tsunami that is going to bankrupt Medicare and Medicaid, so they are increasingly investing in research. And there are a lot more drug companies that are starting to come into the fold. All of that gives me hope.听
听 Photo: Spencer Brown
Age is the best-known risk factor for the disease but family history is also a risk factor. Your grandmother and both of your parents died from Alzheimer鈥檚. How concerned are you and your siblings that it may be hereditary?
It is on my mind all the time. But for me, I need to go on offense as opposed to defense. I often say to people, 鈥淚f I am diagnosed, you know that I will go down swinging.鈥� Alzheimer鈥檚 is not something I can live in fear of, because that is not going to be helpful.听
You have won multiple awards, including the Anthem Award for the nation鈥檚 best health fundraising event, and the Alzheimer Association鈥檚 Jerome H. Stone Philanthropy Award for Alzheimer鈥檚 Research. What do these honors mean for you?
I am not doing it for the honors. I am doing it to find a drug to stop this disease. A researcher from Canada who applied three different times for a Part the Cloud grant, and was twice denied, told me, 鈥淚 was at the point of giving up on my research, but after each rejection, I was given a peer review from the Alzheimer鈥檚 Association of what to change. When I finally got the Part the Cloud grant, I was awarded a million dollars, then my research was awarded $13 million in follow-on funding. Now we have a really promising drug that is going to Phase 3.鈥� So, that is what I get excited about, not the awards.听
What are some of the current research initiatives and clinical trials that bring you hope?
The repurposed drugs are the ones that are getting me most excited. For example, there is a drug out of Colorado for bone marrow transplant that we funded that also reduces the inflammation in the brain and reboots the cells. There are just so many possibilities. They all give me hope for the future.听
What advice would you give to those whose loved ones have been diagnosed with Alzheimer鈥檚?
The stats will tell you that the person taking care of someone with Alzheimer鈥檚 will break before the person with Alzheimer鈥檚 does. So, give yourself permission to get help. Give yourself a couple hours of break during the day, because when that person you love starts to revert into a child who is incapable of retaining the lessons you are teaching them, it can quickly become emotionally and physically exhausting for the caretaker.听
Where can people turn to get a better understanding of how to deal with an Alzheimer鈥檚 diagnosis?
The Alzheimer鈥檚 Association is a vital resource for advice on everything from financial and legal planning to daily care options. It also has local chapters that are very helpful because they offer counseling and information sessions that help clarify what life with Alzheimer鈥檚 entails. Each person reacts to the diagnosis differently, whether it is through anger or despondency. It just hits everyone differently. So, I would recommend contacting the Association鈥檚 24/7 hotline (800-272-3900) and visiting alz.org for information on what to do after a diagnosis.听听听
How can people help in the fight against Alzheimer鈥檚?
You know it comes down to funding. It comes down to the fact that we need more trials. Right now, there are 141 unique drugs in the pipeline, many that have been funded by Part the Cloud. The pipeline is growing, but to use a sports analogy, we need more shots on goal. Cancer has five thousand trials. We need more funding for researchers so that the studies that are in the labs can then go to help people.听
