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.

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.

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.

I’m all lit up from the Public Policy Forum.   More posts to follow about our federal priorities for 2009 and congressional visits, but first I want to focus on the energy of the event.  Given today’s economic climate I was shocked to learn that over 600 Alzheimer’s advocates attended this year’s Forum.  What you might not know is that the vast majority of advocates are volunteers who pay their own way and take time away from work and families to travel to Washington DC.  The fact that 600 people were willing to make such a commitment in times of tight budgets and layoffs certainly sends a message.  I was even more thrilled that five volunteer advocates from the state of Oregon joined me at the Forum–that translated into a volunteer for each congressional district in the state!  Nola Roid (pictured second from right) exemplifies the definition of an advocate.  She is caring from both her husband and brother who have early onset of the disease.  She paid her way to Washington by raising funds at bake sales and auctioning off donated Blazer tickets. 

From the somber energy at the candlelight vigil to the frenetic energy of a day on the Hill the experience of so many people with a shared vision and mission is magical.  It’s impossible not to be touched.  Maria Shriver, who is using her position as First Lady and celebrity to spotlight Alzheimer’s disease, said that her staff told she didn’t need to attend the candlelight vigil at the Lincoln Memorial.  Her response was that the vigil was the place she needed to be.  That anyone who has walked the path of Alzheimer’s wants to pave a new way for those behind us.

Maria was also in DC to promote her upcoming documentary on HBO The Alzheimer’s Project.   The documentary will air May 10-12th.  I caught a sneak peak at the Forum and I can say without reservation there was not a dry eye in the audience.  It’s an incredible look at the Alzheimer’s experience.  I’ll keep you posted about special viewings in the Portland area, and for those of you who don’t subscribe to HBO you can download for free via their Web site.

Curious about how the legislature works, or just looking for an excuse to explore D.C.?  Consider joining us at the Public Policy Forum.  From a candlelight vigil at the Lincoln Memorial to walking the halls of Congress, you’ll lend your voice to the cause.  Save the date now for March 23-25 (early bird discounts are offered through the 6th of February.)  Registration is officially open and thanks to our shrinking economy, it’s likely you’ll be able to score a smokin’ deal on airfare. 

If you can’t attend the forum you can still have your voice heard.  Sign on to become and Alzheimer’s advocate.  Click here for details.  As an advocate you’ll be in the loop on upcoming legislation and public policy events.  Look for a Virtual Forum in the weeks ahead as well.  Hope to see you in D.C.!

I used to watch friends who I thought were able to balance motherhood and work life with grace and ease.  They seamlessly shuffled carpools and cupcakes and then zipped off to the office.  It wasn’t until my reading group read Perfect Madness:  Motherhood in the Age of Anxiety that I realized the struggle to find balance in motherhood is universal. It wasn’t until the past month that I began my own struggle to find this balance.

My volunteer work for the Alzheimer’s Association led to a new position:  The Director of Public Relations and Public Policy for the state of Oregon.  I vacillated for days, well actually weeks, about whether the timing was right for me to take on this new role.  My previous work allowed me the luxury of choosing projects and clients on my own time.  This new position would require structured hours, power suits, and re-arranging care for Luke.  It would also bring a fresh and exciting challenge and allow me to implement change and policy for a cause I have true passion for.   

Should I have you all weigh-in on whether I took the job?  Leave you hanging?  No, I’m sure it won’t come as a surprise that I did indeed accept the position.  Thanks to the wonderful director and staff at the Association they are allowing me to tread lightly.  I’ll be starting halftime this year, allowing for time with Luke and writing projects.  So here’s to the New Year and a new challenge.  I’ll keep you posted as to whether I’ve found my perfect balance.

News came in today that Congress and President Bush have voted to postpone any new spending on medical research or health care initiatives for the next five months.  Additionally the Ending the Medicare Waiting Act that I’ve been working to help push through, will not pass this year.  The legislation has been sidelined until the new president takes office in 2009.  I’ll be working with the Alzheimer’s Association to help ensure the bill is reintroduced and finds additional co-sponsors next year.

In light of the knowledge that there will be no new funding increases, part two of my wrap-up of Dr. Carillo’s presentation will focus on the major clinical trials underway.  It’s important to note that these research initiatives have all been funded by the Alzheimer’s Association.  This means the money you donate when you participate in a Memory Walk or another event sponsored by the Association goes directly to fund these initiatives. 

Dimebon-I think I’ve posted on this drug before, but I’ll recap.  It’s a Russian antihistamine that had been long forgotten, mainly because better antihistamines hit the market.  In it’s first round of clinical trials patients maintained their level of functioning for 18 months.  The Alzheimer’s Association is cautiously optimistic for two reasons.  One–because there a significant differences in the way drug trials are run in Russia.  Two–because this is a drug that treats the symptoms of the disease-not a cure.

Gamma Inhibitors-the drugs in these trials are unnamed, so they’re referenced only by long numbers right now.  I won’t bore you with that information, but the Alzheimer’s Association has further details if you’d like to learn more.  Gamma inhibitors show promise in that they reduce the level of beta-amyloid in spinal fluid and blood.  It remains to be seen if this will be an effective treatment since as we learned in part one, beta-amyloid is no longer thought to be the bad guy.

Rage Inhibitors-again no formal names for this group.  The trials under way for rage inhibitors are thought to reduce inflammation which would potentially provide cognitive protection.

Vaccines-There are two types of vaccines currently in trials, active and passive vaccines.  The long-term goal with any vaccine would be to administer the vaccine before symptoms were present so the individual could mount an immune response.

To sum up, while there have been some impressive gains made in our understanding of the end result of Alzheimer’s disease, there is much to be done from a research standpoint.  I’d like to encourage you all to VOTE!  I truly believe that no disease should be a partisan issue.  Wait for it…BUT, having said that I’ll repeat that if we took the money we spent in three days of operations in Iraq we could fund a clinical trial for fifteen years.

Here’s your summer call to action-sign the Alzheimer’s Associations’s Proclamation.  Before January the Association is collecting over 50,000 signatures to send a message to our next president.  It will only take a minute to add your name to the list of constituents and help inform our 44th president of the growing epidemic.  My name’s on the list, add yours too! 

Currently $644 million is earmarked for Alzheimer’s research.  You can view earlier posts on this issue, but a quick reminder–NIH research dollars for all  other big diseases (cancer, heart disease, AIDS) is in the 3 to 5 billion dollar range.  Additionally, Congress is not expected to complete work on the bill with a shortened session and a veto promise from the White House.  

The proposed $662 million will act as a placeholder until 2009 when discussions will resume.  It’s detrimental to continue to keep this issue in the forefront.  Contact your local representatives and encourage them to ensure Alzheimer’s research is a top priority for 2009.    

[SinglePic not found]You can read the full article here.  I’d like to commend The Columbian for giving this issue top billing, and helping to raise awareness about the multitude of issues families face with this disease.  As the old adage goes any press is good press, but press next to an Obama victory is fabulous press!