I’m just back from a whirlwind week in Washington at this year’s Alzheimer’s Action Summit. The Summit broke an attendance record as over 600 of us stormed the Hill yesterday. There’s so much to report, but frankly I’m jet-lagged and more than a little sleep deprived. So, I’m off to nap, but in the short term I want to share our top three priorities so you can have your voice heard too.
You can help by writing Congress now and telling them it’s time to action on this mounting public health threat. Ask your members of Congress to:
1. To pass the Alzheimer’s Breakthrough Act which will authorize $2 billion in research to Alzheimer’s Disease.
2. To pass the Alzheimer’s Detection, Diagnosis, Care, and Planning Act which will help families get an early diagnosis and better care.
3. To pass the National Alzheimer’s Project Act which will create a strategic federal plan to deal with the Alzheimer’s threat.
In a few short days I’ll be headed to Washington DC for this year’s Alzheimer’s Action Summit. When I was in DC at this time last year, the cherry blossoms were budding along the Potomac River. After last month’s epic snow, I’m guessing I might need to pack a scarf and gloves for this year’s trip.
The experience of being in the Capitol with hundreds of Alzheimer’s advocates from all across the country is energizing and a sign that momentum is on our side. But, for me the most moving part of the trip is the candlelight vigil on the steps of the Lincoln Memorial. Seeing the light from hundreds of candles reflecting in the water and taking a moment to honor the memory of my mother and millions of others like her who’ve succumbed to Alzheimer’s encapsulates the mission and spills into the rest of the events.
For those who can’t travel to Washington, you can light a virtual candle and be part of the experience online. Click here to visit the Virtual Candlelight Rally and light a candle in honor of a loved one or share a message of hope. I’ll be sure to document the experience and post pics when I return, but in the meantime I’m going to get myself in the spirit and light a candle now.
This summer we had the pleasure of hosting Max Larkin and Emily Boardway as they kicked off the first leg of their Spoke Your Mind bike tour across the country. Max’s father has Young Onset Alzheimer’s. As Max and his family (like mine and so many others) tried to navigate the legal system, deal with grief and loss of losing a parent so young, and weather the emotional and financial toll of caring for someone with Alzheimer’s, Max and Emily realized there was a great need to connect with other young people who faced similar struggles. From that Spoke Your Mind was born. Emily and Max spent the summer biking through the United States and connecting with other families of Young Onset Dementia.
On top of the fact that I could completely relate to Max’s story, both he and Emily have an infectious enthusiasm for life and the cause. We were all inspired by their mission and energy, especially Luke who enjoyed having them as roommates for a couple days and now wants to go on a bike tour.
Since their return home, Max and Emily having been editing hours of film they shot on the road. They’ve also submitted a short film to the Neuro Film Fest titled, “The Music in Hugh: A Look at Young Onset Dementia.” Click here to watch the film and vote in the YouTube “Fan Favorite” contest. I just cast my vote and will stayed tuned to see what they do next.
The entire reason I first became involved in Alzheimer’s advocacy is because when my family was in the throes of the disease we had the added stress of worrying about how to pay for my mother’s care. Most of you likely know the saga but as a quick recap her insurance company denied her claim saying Alzheimer’s was a “pre-existing condition” and then to make matters worse since she was under the age of 65 she couldn’t access her Medicare benefits. The result was that for the last three years of her life my dad had to scramble to find alternate care options, spend down their life-savings, and eventually legally separate from her. My dad paid out of pocket for all of her care and she died before any assistance ever kicked in.
After having time to grieve her loss, I decided something was not right with the system. How could it be that my parents who worked as educators, planned, saved, and did everything right we’re completely shut out of services simply because my mother had the unfortunate luck of getting Alzheimer’s before her 65th birthday? Through my involvement with the Alzheimer’s Association I learned there were tens of thousands of people in the same situation. I attended my first Public Policy Forum specifically to testify about ending the two-year wait period for people with Alzheimer’s under the age of 65. From there I learned about so many other policy issues that impact the Alzheimer’s cause.
When I clicked open my email bright and early this morning, news of the biggest policy win in the history of the Alzheimer’s Association greeted me. The Social Security Administration has added Young Onset to its Compassionate Alliance Program which means those with young onset with expedited through the system. You can read more about it here. This is a historic day for the cause and I’m glad to say I was a small part of it.
A little over a year ago Dr. Mario Carrillo, Director of Medical and Scientific Relations for the Alzheimer’s Association, traveled to Portland to give our staff, board members, and donors an update on where we stand in Alzheimer’s research. I blogged about it at the time because she’s an incredible speaker, completely adept at translating complicated scientific principals into concepts that are easy to understand. One of the drugs on her radar at the time was Dimebon, a Russian anti-histamine that seemed to improve the symptoms of Alzheimer’s. The drug was fast tracked through clinical trials here in the U.S. and news over the last week is buzzing. Pfizer is preparing to release new studies on the Dimebon’s performance in early March and a number of financial institutions and media sites are speculating on the potential. Click here to read yesterday’s article on Bloomberg.com. The jury’s still out on how the drug will hold up in larger and more rigorous trails here in the United States, but needless to say I’ll be eagerly awaiting the results–stay tuned!
Luke couldn’t love school or Maestra Bainter more. Spending five minutes in his classroom is jaw-dropping. The entire class is rattling off Spanish phrases, rolling they’re “R’s” and laughing in delight when the wrong transition song is accidentally played (in Spanish of course). This is the way we should all learn language. It’s natural, innate. Even with the announcement that came this week that no more English was to be spoken in the class, Luke shrugged, “No problem,” he said. Although, he did want me to confirm that he could still converse in good old American slang on the playground.
Our inaugural experience with the Vancouver Public School system has been seamless. While the language immersion may be unique to us, all of our friends and family report similar good will toward their home schools. It’s things like class size, quality of instruction and setting up the schools as a hub for the community. My friends across the river in P-town on the other hand are opting for charter and private schools because they can’t stomach the thought of a kindergartner in class of 30+ students.
When my ballot for the replacement levy arrived in the mail this afternoon I ripped it open and voted “yes” right away. And here’s my political plea to my fellow ‘Couvers. We have an amazing resource in our public schools here–let’s be sure to preserve it! (If you need more information about the levy click here or feel free to send me a message.)
(This picture is an oldie but goodie)While November is officially National Family Caregivers Month, the first few weeks of January have seen a surge in caregiver stories in the national media. This incredible feature in the New York Times is a must read, especially coupled with news that came out late last week highlighting the fact that husbands caring for ailing wives are at great risk for strokes.
The Alzheimer’s Association has seen a 25% increase in calls to the 24/7 Helpline (800-272-3900) from December 2009 through January 2010. At our office in Portland, there’s been a steady stream of family caregivers coming in the doors for support groups, classes, care consultations and to browse our lending library. It’s wonderful to witness people connecting with our programs and services but overwhelming to see how great the need is.
Watching the weathered, anxious faces of caregivers also takes me back to the days of trying to juggle a newborn and help out in caring for my mom. I’m sure the sleep deprivation didn’t help, but there were days that it took every ounce of energy I had to hold it together. And, I was NOT her primary caregiver. That duty went to my father who was working full time in order to cover the cost of medical care. In hindsight, I wish we would have tapped into more services but at the time (like most caregivers) we were just trying to get by. So, to any blog readers out there who are also caregivers please visit www.alz.org, call the Helpline and take care of you too!
One of the ongoing discussions we have at the office is how do we change public opinion about Alzheimer’s disease? It’s a huge challenge, especially given the plethora of misinformation and stereotypes that circulate within the general population and sometimes even the medical community about the disease. Compound that with the debilitating nature of the disease and the fact that families living with Alzheimer’s are under tremendous amounts of stress. From my marketing slant, I know that showcasing the impact Alzheimer’s has on families and its devastating effects is what will eventually change public opinion. One of our 2010 marketing goals is to help give voice to those living with Alzheimer’s. We want people in the early stages sharing their story. This is never a hard sell internally. Getting the media to bite on the other hand is another issue.
Yesterday was a banner day and started with this feature on the front page of the Oregonian, touting the benefits of exercise as a preventative measure in the fight against Alzheimer’s. Then our local CBS affiliate featured a story on participants of our early stage program which tied in to Katie Couric’s feature Where American Stands on Alzheimer’s Disease. Finally, as I tuned in to American Idol (I know it’s a guilty pleasure) they covered a touching story about Katie Steven’s, a young Idol-hopeful whose grandmother has Alzheimer’s. The interaction between Katie and her grandmother were lovely and even Ryan Seacrest teared up when Katie called her grandmother to let her know she was headed to California. MTV is calling her one to watch. Not to worry, I’m already on it and I’ll be watching for more Alzheimer’s coverage this year–helping to change public opinion one story at a time.
There’s an old song my mom used to sing to us as our Bluebird troop leader. It went something like, “Make new friends, but keep the old. Some are silver and the other gold.” Little did I know it as a ponytail-clad first grader, but that simple song with its easy rhythm is a proverb of sorts that I still adhere to today.
Throughout the years my friendships have evolved and grown, often mirroring where I’m at, at a particular moment in time. Co-workers became friends when I was fresh out of college and always up for a night out on the town. The past few years I’ve gravitated to friends with young children who I’ve met at the park or play-dates. These silver friends are new and shiny like a dime fresh off the minting press. They represent today. Some morph into long term gold friends and other drop off as paths shift in new directions.
But, then there are the gold friends–friends who’ve known me young. Friends like the ones we traveled with this holiday season who camped out in the snow for two days to score Rose Bowl tickets the last time we went (this time they were purchased online thank with a quick flash of a credit card thank you very much). My gold friends and I have seen each other through breakups, deaths, and staggering joy. They’ve become family over the years, the kind of friends I knew I can call at 2am and travel the world with. While my gold friends may be smaller in number, our friendship has aged and remained steadfast with the passing of time.
So, with the dawning of a new decade thank you to my silver and gold friends, and here’s to those of friends yet to be.
Technology love it or hate it, this one just might buy us another few years of believing…a direct message from Santa with an insider’s view of the North Pole. Need I say more? Happy Holidays 2009 style! Portable North Pole (PNP).
