Mikey Hoag: Calling on a Community to Raise Funds

Hoags_Adriana Klas Photography-8891Nothing made Michaela (Mikey) Hoag of Atherton, California, feel more powerless than when her father, living more than 2,000 miles away on the East Coast, was diagnosed with Alzheimer’s disease. Unable to help with her dad’s daily care and unwilling to sit idle, she turned to her husband, Jay, and asked “What can we do?”

Mikey reached out to the Alzheimer’s Association with questions about the disease — and walked away with information, resources and much more. In the Association, she found a partner to help her develop and pursue her philanthropic vision to help solve the problem of Alzheimer’s.

In 2004, Mikey and Jay pledged their first $1 million gift to the Association’s research program, placing them as lifetime members of the Zenith Society, the Association’s highest and most involved level of philanthropy. But despite her increased support, which included attendance at Association fundraising events across the country, Mikey remained reluctant to speak out about her connection to the disease. It was after her father passed away in 2007 that she realized the power her story could have in bringing people together and rallying them around the Alzheimer’s cause.

“I didn’t know if people would respond if I spoke out,” Mikey said. “But I had two choices: I could ignore the problem or I could do something about it. And when my mother started to show the signs of the disease, I knew I had to kick it in gear. This couldn’t wait.”

Mikey decided that she could use her experience with Alzheimer’s to start an event in Silicon Valley, a hub for innovation and problem solving. Aided by a steering committee of dedicated women affected by the disease, her idea — an inspirational gala calling on community leaders, powerful business executives and celebrities to raise awareness and funds to fight the disease — began to take shape.

On May 5, 2012, the first Part the Cloud gala was held in Menlo Park, California. The event featured a live performance by American icon Tony Bennett and appearances by Bill Walton, Joan Baez, Mickey Hart, Terry Moran, Virginia Madsen and other well-known celebrities. It was an evening of music, dancing and storytelling that raised nearly $2 million to advance the research efforts of the Alzheimer’s Association. From there, the event continued to grow: In 2014, Part the Cloud raised over $4 million, making it the largest one-day fundraiser in the Association’s history.

The biennial gala alternates yearly with a luncheon of the same name, and together the two events have raised over $6 million to date, allowing the Association to support the work of some of the nation’s most prestigious scientists and universities. Awards from Part the Cloud focus on accelerating the transition of critical findings from the laboratory through trials and into possible therapies — filling the gap in Alzheimer’s drug development by providing essential support for early-phase clinical studies.

“Research is the only way to end this disease,” Mikey said. “I know that I can raise money, and I’m confident in the Association’s ability to invest the funds in the most meaningful ways.”

To accelerate research at an even faster pace, Mikey is encouraging corporations to match Part the Cloud’s grant funding. In 2014, Part the Cloud received 35 grant applications from promising researchers in North America but was only able to fund five. Mikey is confident that with the support of corporations, the number of projects they could fund would significantly increase.

Ref lecting on the past few years, Mikey is optimistic about the power of community and what can be achieved, especially with a strong network. She recently joined My Brain™, a movement that calls on 1 million women to use their amazing brains to wipe out Alzheimer’s disease.

“This wonderful philanthropic family has developed across the country,” Mikey said. “There are times when you’re exhausted and feel like you’re not making any headway, and then you meet strong women like Dagmar Dolby and Maria Shriver and you know others are fighting just as hard for the same cause. It keeps me going.”

Learn more about Part the Cloud at alz.org/galas.

Signs of Alzheimer’s Seen 18 Years Before Symptoms

The results of a study from Rush University Medical Center in Chicago show that signs of cognitive impairment can be detected as early as 18 years before the disease is diagnosed.Signs of Alzheimer's Seen 18 Years Before Symptoms

Learn more about this study and what it means for early detection of dementia.

Signs of Alzheimer’s Seen Years Before Diagnosis

A research team led by associate professor of internal medicine at Rush University, Kumar Rajan, has found that early signs of cognitive impairment leading to Alzheimer’s may present themselves 18 years before symptoms occur.

Rajan and his colleagues observed over 2,000 seniors who did not have dementia over the span of 18 years. Every three years, the participants took a mental skills test and then analyzed the results over time. They found that those seniors who eventually developed Alzheimer’s has lower test scores throughout the 18 year period. In addition, their scores actually declined with each test.

Researchers concluded that for each unit their score dropped, the risk of developing Alzheimer’s increased by 85%.

Testing to Predict Alzheimer’s Risk

Researchers caution that their study only demonstrates a link between testing scores and a group-level risk and that as of now, the tests can not be used to predict an individual’s risk of developing Alzheimer’s. More research will be needed to determine how testing can be used to determine an individual’s risk.

For now, researchers believe their findings suggest that a cognitive test should be part of a regular assessment for people beginning in middle age. Catching Alzheimer’s early will give doctors more time to intervene and slow the progression of the disease.

Next, Rajan plans to study the effects of brain-stimulating activities on Alzheimer’s once it is diagnosed.

Do you think regular cognitive testing should be a part of standard medical care? Why or why not? Share your thoughts with us in the comments below.

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Caregiver 101

Caregiving 101
By Michael Plontz

A family member has just been diagnosed with an illness that will eventually require round-the-clock care. Of course you want to be the one giving that care. This decision is usually made without hesitation; of course we want to be our loved one’s caregiver. Who else could take better care of them? However, when the reality of your decision sinks in, your head will be swimming with uncertainty, anxiety, and maybe even fear. Certainly you will have many questions. Welcome to Caregiving 101, a primer for first-time caregivers.

First of all, arm yourself with knowledge. An old maxim states that “Knowledge is power,” and it’s true. Knowledge will empower you to take the best care of your loved one and yourself. Learn all that you can about your loved one’s condition, illness or disease. There are local branches of national organizations like the Alzheimer’s Association and the Cancer Society all over the country. Use them as a tool to find out all about your loved one’s present condition and what the future may hold for both of you.

Another reason to learn is to take better care of your loved one. You may educate yourself through health care manuals, books and videos. The Internet is also a good source of information, but navigate carefully through that material because not all of it is valid. Also, ask lots of questions of your health care professionals. They are the best people to show you proper techniques like transferring, lifting and bathing. When you learn all that you can, you will be more confident in your caregiving abilities.

Caregiving can be an isolating experience, so it’s helpful to talk to others who are, or have been, in your shoes. You will feel that you are a part of a growing community of caregivers. You may also learn about options and community resources that you were not aware of from other caregivers. These people can also help with difficult decisions concerning your loved one. Determining your responsibilities will probably be one of the first things you struggle with, so talk to others who’ve been there before.

You must remember to take regular breaks from your caregiving responsibilities. You can’t be good to someone else if you’re not good to yourself. Use your relatives. They can help in several ways—financially, socially, and as respite support. If relatives are unavailable or do not exist, try community services like a volunteer group at your local church. Try and follow these guidelines for caregiving breaks: take half-an-hour a day to practice yoga, meditation, needlepoint, reading, etc.; spend a couple of hours a week away from the house at the mall, coffeehouse, library, etc.; monthly you should have an evening out with friends, go to a play or concert, etc.; on a yearly basis you should go on a well-planned (and well-deserved) vacation. These guidelines will help in avoiding “caregiver burnout.”

Your community most likely has organizations about which you never gave a second thought until now. These may include, but are not limited to, Meals on Wheels, day care centers, and home care agencies. If applicable, contact your local Area Agency on Aging for a list of services and organizations. Your local medical supply store may have gadgets and devices to enhance your loved one’s abilities, at the same time making your life a little easier. You might also inquire about local, state or federal programs that might provide financial aid for you and your loved one. As needs increase, so do costs. Understanding which programs can help and what you can afford, will allow you to plan for the future.

One way to deal with the emotional roller coaster you may experience is to get your feelings down on paper. Some journal entries might address the following subjects: How do you feel now? What are your fears and/or concerns? What outcomes would you like? What losses have you noticed so far? What changes in your relationship with your loved one have cause you to feel sad? What changes have given you comfort? Journaling is a healthy way to put your feelings “out there” and to possibly alleviate some of the anger, frustration and helplessness you may be feeling.

Caregiving need not be a lonely and emotionally debilitating experience. According to the latest statistics on caregiving for the National Family Caregivers Association, nearly half of the U. S. population has a chronic condition. From that number 41 million are limited in their daily activities while 12 million are unable to live independently or even leave the house. One can deduce from these numbers that there are millions of family caregivers out there. So keep in mind that you are not alone, and best of luck to you and your loved one.

Walk to End Alzheimer’s

What’s With All of the “Walk” Talk?Walk to End Alzheimer's

Ahh, summer, the season that lays claim to some of our nation’s favorite collective activities.  The heady scents of Hawaiian Tropic Suntan Lotion and chicken smothered in barbecue sauce cooking on the grill are in the air.  The rip and sputter of neighborhood lawnmowers starting accompany morning bird songs as the heat of the day signals a soundtrack change to the latest summer anthem heard via mobile concerto courtesy of the young people driving past the house with their car windows down and music turned up.  The time of year where the undulating click and hiss of a sprinkler head watering the lawn and cooling our warm skin with its’ intermittent spray, and an individually wrapped Popsicle of our very own can make just about any day a little bit better.  Nights under cool cotton sheets with a warm breeze blowing cricket chirps and frog conversations so close by through an open window that their sounds seem almost decipherable.  We tend to spend more hours outdoors in the summer than any other time of year.  We take more vacations and travel more frequently this time of year.  We seem to have fewer commitments and more possibilities.

 

Tennis ShoesSummer provides a season perfectly suited for making memories.  Graduations, weddings, family trips, and first kisses.   For most of us, our favorite sun-drenched summer shenanigans, mundane moments and meaningful milestones are still accessible memories we can choose to call up whenever we want to revisit them.  Unfortunately for those coping with Alzheimer’s, those poignant pieces of personal history can be hard to retrieve.

That’s why, for Alzheimer’s advocates across the country, summer is also the start of the “Walk Season.”

The Alzheimer’s Association Walk to End Alzheimer’s® or “The Walk” as it’s affectionately known, is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research.  Held annually year-round in more than 600 communities over all 50 states, the walk unites more than 450,000 participants in a walk designed in equal parts to raise as much awareness as increase needed dollars to support the fight against Alzheimer’s.

If you’ve been following the news, you’ll note that just last week the Senate Appropriations Committee approved a historic 60% increase in research funding as an enhancement to the Alzheimer’s Accountability Act.  If passed into law, this would be the largest increase in Alzheimer’s funding to date, according to the Alzheimer’s Association.

There is still a tremendous need for more funding to provide and enhance programs focusing on education and support, advance critical research studies into methods of treatment, prevention and ultimately, and most importantly, a cure.

 

2012 Walk To End Alzheimer'sI can almost feel your eye roll as you read this… I know what you’re thinking, and I can relate.   It’s easy to feel the effects of “fund-raising fatigue” when it seems like everywhere you turn a worthy cause or organization is asking for financial support.

You might be thinking, that if The Walk is the largest fundraising event for Alzheimer’s it sounds like they’ve already pretty much got it covered without us having to lace up our sneakers and cajole family and friends into donning matching purple shirts, for a stroll around a nearby landmark, right?

Well, not so fast.   As it turns out, Alzheimer’s could use a lot more help in the awareness and financial resources area.   For starters, the proposed increase in government spending hasn’t passed yet and meanwhile deaths from Alzheimer’s disease rose a staggering 68% in the last decade to become the #6 cause of all deaths in the United States and the only cause of death in the in the list of top 10 without any cure or treatment and every 68 seconds someone new gets it.

Also, not to be bitter, but according to a recent ranking of the Top 100 Non-Profit Fundraising Organizations, the Alzheimer’s Association (the only Alzheimer’s-related non-profit that even made the list) comes in at a disheartening 35th behind other notable causes such as the preservation of public radio, art museums, and libraries, and after maintaining our mountains, and behind ensuring the future of whales, panda bears and the boy scouts.   Every one of these top 100 non-profits are all wonderful organizations doing great work. In fact, we contribute what we can to several of the top 100 non-profits here in our house.

In the weeks and months ahead as Walk Season takes hold there will likely be a steady parade of progressive pledge requests and tee-shirt sales circulars making their way into your social media feeds, inboxes and water cooler conversations. Before you feign a  particularly destructive computer virus or cite a selectively inoperative cell phone rendering you unable to respond to such appeals, please take a moment to think about where the funds everyone is trying so hard to raise actually go.

 

Alzheimer's Association InfographicThe Alzheimer’s Association is the world’s largest non-profit funder of Alzheimer’s research, awarding over $335 million to more than 2,250 scientists since 1982, and through their partnerships and funded projects, has been part of EVERY major research advancement in the fight against Alzheimer’s over the past 30 years.  Their 24-hour helpline (1-800-272-3900) offers free information and advice by professionally trained staff to over 250,000 callers every year, they run over 4,500 support groups nationwide (an average of 90 in each state), curate the nation’s largest library and resource center devoted to Alzheimer’s disease and related dementias, deliver 20,000 education programs annually, and their comprehensive and interactive website connects people across the globe impacted by Alzheimer’s.

The Alzheimer’s Association is also the world’s leading voluntary health organization in Alzheimer’s care, support and research.

But they are just that – largely voluntary – and over one third of their annual revenue comes from the walks.  It might not seem like such a big organization needs a little help from people like us, but it’s the people like us that make it possible for them to offer a lot of the programs we count on them to deliver.

Me in my walking gear!

Sometimes starting or donating to a walk team or buying a tee-shirt or can make the difference between whether a local chapter can offer a support group on the weekends, provide an educational program to a group of future caregivers, get needed information in the hands of those newly diagnosed, or if the national office can allocate critical dollars to a lab of international experts studying the effectiveness of current medications.

If we’re going to be outside slathered in our coconut scented suntan lotion humming this year’s anthem of summer looking for a Popsicle between barbecues anyhow, then we might as well do some good.  It doesn’t cost anything to register, and who knows, maybe I’ll run into you at a Walk in your area. You’ll know it’s me because I’ll be the one in the purple tee-shirt! :)

Stories My Grandfather Told Me

I am sitting at a dinner party in Deauville, France, listening to my grandfather recount stories I’ve heard him tell a thousand times before; times spent with Peter O’Toole in the desert, his love affair with Barbra Streisand and with other leading ladies, past exploits at card tables and racetracks.omar1

But this night is different. The stories are off; rich details normally embedded like fine jewels are missing. The characters are colorless and the anecdotes lack grounding in space and time – they just seem to float out of place and order. Attempts at humor have been replaced by an obvious air of anxiety and frustration brought on by his trying to remember.

He’s just tired, I think to myself. He’s been traveling too much. Pay it no mind.

But then he starts the stories over again, seemingly unaware that he’s just finished recounting them.

Something is wrong.

This was my first indication that my grandfather had Alzheimer’s disease, and in the subsequent years, many clues would follow.

omar2It’s the quintessential irony — creating a life filled with cherished memories and relationships only to lose them.

A World Champion bridge player, an Academy Award nominated actor, a man proficient in seven languages with a higher IQ than anyone I’ll likely ever meet…Alzheimer’s does not discriminate in its victims.

It has been a slow and steady decline made all the more apparent by a lack of forward progress towards finding a cure.

So we must unite.

Throughout the month of June, join me in taking the pledge to “Go Purple” for Alzheimer’s awareness and let’s find purplepledgeomara cure together.

Alzheimer’s is a thief — stealing brilliant minds. This disease must be stopped.

 

About the Author: Omar Sharif, Jr. is an Egyptian actor and spokesperson. An advocate for equal human rights, he is the grandson of legendary Hollywood actor Omar Sharif.