Photo: Anastasia Blackman

Mikey Hoag Is on a Mission. Alzheimer’s Doesn’t Stand a Chance.

The BC trustee, who lost both her parents to the deadly disease, has become one of the country’s leading fundraisers for a cure. 

Alzheimer’s disease, which affects 6.7 million Americans, 是美国第六大死因,也是65岁以上成年人的第五大死因. And yet it remains a disease that cannot be prevented or cured. BC Trustee Michaela “Mikey” Hoag ’86, P’14, who lost both of her parents to Alzheimer’s, 她是否以改变这一现状为己任,并在此过程中成为美国最成功、最杰出的慈善筹款人之一. She’s the force behind the Part the Cloud movement, 它代表阿尔茨海默病协会为阿尔茨海默病的电子游戏正规平台筹集了6800万美元, and she even managed to convince Bill Gates to write a (suitably massive) check. BC Magazine 与这位获奖的阿尔茨海默氏症筹款人坐下来,了解更多她对治疗方法的探索.


You were living in California with your husband, Jay, when your father was diagnosed with early-onset Alzheimer’s 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, “What is my role in all of this?” So, Jay and I decided we were going to invest in Alzheimer’s research. 我们联系了阿尔茨海默氏症协会,做了一份礼物,因为当我们开始寻找答案时, there was absolutely nothing. No drugs, no path forward. Nothing.

当你与你父亲的病作斗争时,你母亲被诊断出患有老年痴呆症.

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. 

You grew up on a farm in New Jersey where you fed chickens and baled hay. 对于一个在为一种致命疾病的治疗方法筹款中发挥主导作用的人来说,这并不是最明显的背景.

在不列颠哥伦比亚省,你被教导要挽起袖子,参与其中,并试图产生影响. Alzheimer’s 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’s is something that just needs to be fixed, and I do believe that it is within our reach to do so.  

2012年,你代表阿尔茨海默氏症协会发起了“部分云”晚会. What was your expectation for the inaugural event?

A friend of mine came to me and said, “There are so many of us who have been touched by Alzheimer’s disease. You need to do a fundraising event.“我告诉她,没有人会在周六晚上出现在老年痴呆症的活动中. No one even wants to talk about it. Nonetheless, 我召集了一个由我认识的阿尔茨海默氏症患者组成的委员会来计划一个筹款活动. 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, 没有表演者会把自己和阿尔茨海默症联系在一起,因为他们觉得如果他们这样做了, 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, 但它让我意识到,人们愿意帮助抗击这种疾病,这是我们任何人都没有想到的. 

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.

这个低期望值的晚会已经成为一个常规活动,筹集了超过6800万美元.

两年一度的“部分云”联欢晚会和“部分云”午宴延续了这一势头. We are now one of the world’s largest drivers of Alzheimer’s research. There are 178 ongoing Alzheimer’s trials, and we have funded sixty-five of them, in nine countries, and follow-on funding from these trials has reached $1.43 billion. Prior to Part the Cloud, 阿尔茨海默氏症协会没有专门的资金流用于后期药物开发. So, 我们专注于开始人体试验,希望其他资金来源,如联邦政府或风险资本投资者会资助他们. 

In 2019, 比尔·盖茨向阿尔茨海默氏症协会捐赠了1000万美元,该协会资助了一项配对礼物挑战,并为部分云的全球电子游戏正规平台项目额外筹集了2000万美元的私人资金. 

Bill Gates was huge to our efforts. I read in the paper that his father had Alzheimer’s, 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, “It has been a year now. You have to let go.两小时后,比尔·盖茨发来一封电子邮件:“你和我需要谈谈。. You are doing exactly what my team is looking for.” So, I do believe that there are angels out there, my parents among them. 

The CDC says that approximately 6.7 million Americans are living with Alzheimer’s 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’s. 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’s 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. 

Despite all the money you have raised and the research it has funded, 目前还没有有效的干预措施来延缓或阻止阿尔茨海默病的发展. 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’s underlying biology, 在2024年,我们希望有一种血液测试可以确定人们患有这种疾病的位置,而眼睛扫描可以让人们看到他们未来是否会患上阿尔茨海默病. 这些突破将使试验成本下降,更多的人希望参与其中. 政府意识到阿尔茨海默氏症是一场海啸,它将使医疗保险和医疗补助计划破产, 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. 

TK

  Photo: Spencer Brown

年龄是最著名的风险因素,但家族史也是一个风险因素. Your grandmother and both of your parents died from Alzheimer’s. 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, “If I am diagnosed, you know that I will go down swinging.“阿尔茨海默氏症不是我可以生活在恐惧中的东西,因为那对我没有帮助. 

You have won multiple awards, including the Anthem Award for the nation’s best health fundraising event, and the Alzheimer Association’s Jerome H. Stone Philanthropy Award for Alzheimer’s 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. 一位来自加拿大的电子游戏正规平台人员申请了三次不同的“部分云”资助, and was twice denied, told me, “I was at the point of giving up on my research, but after each rejection, I was given a peer review from the Alzheimer’s 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.” So, that is what I get excited about, not the awards. 

目前有哪些电子游戏正规平台项目和临床试验给你带来了希望?

The repurposed drugs are the ones that are getting me most excited. For example, 科罗拉多有一种我们资助的用于骨髓移植的药物,它也能减少大脑中的炎症,并使细胞重新启动. There are just so many possibilities. They all give me hope for the future. 

你会给那些亲人被诊断患有阿尔茨海默氏症的人什么建议?

统计数据会告诉你,照顾阿尔茨海默病患者的人会比阿尔茨海默病患者更早崩溃. So, give yourself permission to get help. Give yourself a couple hours of break during the day, 因为当你爱的人开始变回一个孩子,无法记住你教给他们的东西, it can quickly become emotionally and physically exhausting for the caretaker. 

人们可以从哪里得到更好的理解如何处理阿尔茨海默氏症的诊断?

阿尔茨海默氏症协会是一个重要的咨询资源,从财务和法律规划到日常护理选择. 它也有地方分会,非常有帮助,因为他们提供咨询和信息会议,帮助澄清阿尔茨海默氏症患者的生活需要什么. 每个人对诊断结果的反应不同,无论是愤怒还是沮丧. It just hits everyone differently. 因此,我建议您联系协会的24/7热线(800-272-3900)并访问alz.org for information on what to do after a diagnosis.   

How can people help in the fight against Alzheimer’s?

You know it comes down to funding. It comes down to the fact that we need more trials. 目前,有141种独特的药物正在研发中,其中许多是由部分云资助的. The pipeline is growing, but to use a sports analogy, we need more shots on goal. Cancer has five thousand trials. 我们需要为电子游戏正规平台人员提供更多的资金,这样实验室里的电子游戏正规平台才能帮助人们.