Photo: Anastasia Blackman
Mikey Hoag Is on a Mission. Alzheimer’s Doesn’t Stand a Chance.
The BC trustee, 她的父母都死于这种致命的疾病, 已经成为全国最主要的治疗筹款人之一了吗.
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mailAlzheimer’s 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. 然而，它仍然是一种无法预防或治愈的疾病. BC Trustee Michaela “Mikey” Hoag ’86, P’14, who lost both of her parents to Alzheimer’s, has made it her mission to change that—and in the process has become one of the nation’s most successful and prominent fundraisers for the cause. 她是“部分云”运动的幕后推手, which on behalf of the Alzheimer’s Association has raised $68 million for Alzheimer’s research, 她甚至成功地说服比尔·盖茨(Bill Gates)写了一张(相当大的)支票. BC Magazine sat down with the award-winning Alzheimer’s fundraiser to learn more about her quest for a cure.
你和你丈夫住在加州, Jay, 1994年你父亲被诊断出患有早发性阿尔茨海默病. 当你第一次收到这个消息的时候是什么感觉?
It was devastating. I felt blindsided. 我是六个兄弟姐妹中的一个，我所有的兄弟姐妹都住在新泽西州我父母附近. 每个人都在身体上和情感上帮助我. 我感到迷茫，于是我问自己:“我在这一切中的角色是什么?“所以，杰伊和我决定投资阿尔茨海默病的电子游戏正规平台. We contacted the Alzheimer’s 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’s illness, your mother was diagnosed with Alzheimer’s.
当我妈妈在2011年得到诊断时，我决定要把这件事公之于众. 我需要谈论这种没人愿意谈论的疾病. 我需要让人们知道，谈论它是可以的, because if we do not talk about it, we are never going to find a cure.
你在新泽西的一个农场长大，在那里你喂鸡，捆干草. That’s not the most obvious background for someone who’s playing a lead role in the fundraising for a cure to a deadly disease.
At BC, you are taught to roll up your sleeves, get involved, and try to make an impact. 阿尔茨海默氏症不是我想要的东西, 但我们的耶稣会教育告诉我们，当你需要投入的时候, you jump in. And for me, 阿兹海默症是需要治疗的, 我相信这是我们力所能及的.
To jump in, you launched the Part the Cloud Gala, on behalf of the Alzheimer’s Association, in 2012. 你对开幕式有什么期待?
A friend of mine came to me and said, “我们中有很多人都被阿尔茨海默病所感动. You need to do a fundraising event.” I told her, nobody is going to show up on a Saturday night for an event for Alzheimer’s. No one even wants to talk about it. Nonetheless, I pulled together a committee of people who I knew were affected by Alzheimer’s to plan a fundraiser. 直到活动前两个月，我还不确定它是否会发生. 我们没有钱，我们需要一个歌手, and no performers would associate themselves with Alzheimer’s because they felt that if they did, people would assume they had the disease. 然后，通过一个朋友，我们让托尼·班尼特同意无偿演出. 活动门票立即售罄，我们筹集了200万美元. 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.
“I am not doing this for the honors. I am doing it to find a drug to stop this disease. 这才是让我兴奋的，而不是奖项.”
That low-expectation gala has become a regular event that’s raised more than $68 million.
The momentum has continued every year through the biennial Part the Cloud Gala and Part the Cloud Luncheon. 我们现在是世界上最大的阿尔茨海默病电子游戏正规平台的推动者之一. There are 178 ongoing Alzheimer’s trials, and we have funded sixty-five of them, in nine countries, 这些试验的后续资金已达到1美元.43 billion. Prior to Part the Cloud, the Alzheimer’s Association didn’t have a dedicated funding stream for late-stage drug development. So, we’re focused on getting human trials started in the hopes that other funding sources like the federal government or venture capital investors will fund them.
In 2019, Bill Gates made a personal gift of $10 million to the Alzheimer’s Association that funded a matching-gift challenge and spurred an additional $20 million in private funding for Part the Cloud’s global research programs.
Bill Gates was huge to our efforts. 我在报纸上看到他父亲得了老年痴呆症, 所以我做了一个ppt，让一个认识他的朋友发给他. Months went by and nothing happened. 所以我们重新做了ppt，我朋友把它转发给了他. A year went by. 我丈夫对我说:“已经一年了. You have to let go.” Two hours later, an email came in from Bill Gates that said, “You and I need to talk. 你做的正是我的团队要找的.“所以，我相信世界上有天使，我的父母就是其中之一.
The CDC says that approximately 6.700万美国人患有阿尔茨海默病, 预计到2060年，这一数字将增加两倍. 该国是否为即将到来的卫生危机做好了准备?
Not at all. 这些数字并没有显示出所有的老年痴呆症患者. For instance, when my father passed, he died of pneumonia, 他的死因就是这样被记录下来的, 尽管他患有阿尔茨海默病已经12年了. 随着我们寿命的延长，这些数字将会迅速翻倍. 所以，这是我们绝对需要走在前面的.
尽管你筹了那么多钱，资助了那么多电子游戏正规平台, there are still no effective interventions that delay or stop the progression of Alzheimer’s disease. How do you remain hopeful?
因为我看到了隧道尽头的光明. In 2023 the FDA approved Leqembi, 这是第一个针对这种疾病潜在生物学的治疗方法, 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’s 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’s is a tsunami that is going to bankrupt Medicare and Medicaid, so they are increasingly investing in research. 还有更多的制药公司开始加入到这个行列中来. All of that gives me hope.
Photo: Spencer Brown
Age is the best-known risk factor for the disease but family history is also a risk factor. 你的祖母和你的父母都死于老年痴呆症. 你和你的兄弟姐妹有多担心它可能是遗传性的?
It is on my mind all the time. 但对我来说，我需要进攻而不是防守. 我经常对人们说，“如果我被诊断出来，你知道我会很痛苦.” Alzheimer’s is not something I can live in fear of, because that is not going to be helpful.
You have won multiple awards, 包括全国最佳健康筹款活动的圣歌奖, and the Alzheimer Association’s Jerome H. 阿尔茨海默病电子游戏正规平台斯通慈善奖. What do these honors mean for you?
I am not doing it for the honors. 我这样做是为了找到一种药物来阻止这种疾病. A researcher from Canada who applied three different times for a Part the Cloud grant, and was twice denied, told me, “我几乎要放弃我的电子游戏正规平台了, but after each rejection, 阿尔茨海默氏症协会给了我一份同行评议，告诉我需要改变什么. When I finally got the Part the Cloud grant, I was awarded a million dollars, 后来，我的电子游戏正规平台获得了1300万美元的后续资助. 现在我们有一种非常有前途的药物进入了第三阶段.“所以，这才是让我兴奋的，而不是奖项.
What are some of the current research initiatives and clinical trials that bring you hope?
重新利用的药物是最让我兴奋的. 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.
What advice would you give to those whose loved ones have been diagnosed with Alzheimer’s?
The stats will tell you that the person taking care of someone with Alzheimer’s will break before the person with Alzheimer’s does. So, give yourself permission to get help. 每天给自己几个小时的休息时间, because when that person you love starts to revert into a child who is incapable of retaining the lessons you are teaching them, 它很快就会让看护人在情感和身体上精疲力竭.
Where can people turn to get a better understanding of how to deal with an Alzheimer’s diagnosis?
The Alzheimer’s 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’s 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’s 24/7 hotline (800-272-3900) and visiting alz.网站获取诊断后该做什么的信息.
人们如何帮助对抗阿尔茨海默病?
You know it comes down to funding. 归根结底，我们需要更多的试验. Right now, there are 141 unique drugs in the pipeline, many that have been funded by Part the Cloud. 管道正在增长，但用体育运动来类比，我们需要更多的射门. 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. 
