When the Forecast Calls for Rain

This weekend's forecast called for rain so I'd decided to finally paint my den and beg off training this week. Then the Saturday morning forecast shifted to sunny and clear and I simply had to get out on the road! With numerous options departing from my front door, I chose a picturesque 32 mile loop through the Snohomish Valley. The route crosses three rivers - the Snohomish, Skykomish & Snoqualmie - while encircling the valley through which the three come together as one.

Sunny skies, spring blossoms, snow-capped mountains, spectacular vistas - the only thing keeping this from perfection was a companion, so I decided to take you along! My pics don't do justice to the view. Show up with your bike and I'll gladly show you the real thing!

"Silence is one of the hardest arguments to refute"

Today is the National Day of Silence. In honor of this annual youth-led event to draw attention to anti-LGBT name-calling, bullying and harassment in schools, my remarkable daughter & ESAR volunteer, Caitlin, shares her experience with the power of silence...

"I had a couple of gay friends in high school and we started the school's Gay Straight Alliance (GSA) together. The Day of Silence actually gave us the idea to create the GSA; we first participated in my junior year and I've observed the day twice since."

"It is one of my strongest beliefs that all people should have the right to love freely and openly. Homophobia is a serious issue across the globe, noticeably so in my high school. Our new, tiny GSA managed to do enough advertising of its first Day of Silence to gather a respectable number of participants (15-20) and most of the teachers were accepting if not supportive of our silence."

"The next year we had a better idea of what we were doing. Our GSA had won a long fight with the school board to become formally recognized as an ASB club and had gained many more members. That senior year, at least 50 students participated in the Day of Silence. We handed out note cards to the confused, detailing why we were silent that day and spread awareness. Honestly, I was surprised at the amount of positive reactions we received; the most negative reaction I remember was from another student raising her eyebrows and asking if I was serious. I stared at her until she walked away. "

"The following year, I was at Wells College and I swear I didn't hear a word the entire day. It was incredible how different the environment was at liberal Wells compared to the more conservative setting of my high school. Everybody knew it was the Day of Silence. Walkways across campus were chalked with statements and buttons were passed out to allow easy identification of participants. Many professors opted to show videos in class so they too could observe the day. One of the phrases chalked on the sidewalks at Wells was 'Silence is one of the hardest arguments to refute,' and I think that's true. No matter where or how it's done, mere silence is one of the most effective ways to end the silence."

California Ridin'

Seems I picked a good weekend to stay in California and get in a weekend training ride beyond my usual commuter route in the busy South Bay.

Confused? Yes, my home is northwest of Seattle and I generally train with the Puget Sound Riders in the entire area encircling, where else, Puget Sound. But for the past 3+ years I've worked in Santa Clara, CA, flying down Monday mornings, returning Friday afternoons. Three weekday spin classes and weight training couldn't quite make up for missed saddle time so 2 yrs ago I bought a my California bike and joined some colleagues on after-work explorations of South Bay bike trails. Last year I ventured over to the East Bay, joining Debi on her weekly homebound commute. We had a great time and some interesting adventures even while dodging Silicon Valley rush hour traffic!

For many years I'd heard of the beautiful Bay Area rides but had never experienced one. Lucky for me, Jill is training for the AIDS Lifecycle and was up to giving me a taste of California training. What a fabulous ride on a glorious spring day - cool by CA standards but just right for me.

**Enroute surprise - About 2 miles in, I recognized the neighborhood though I hadn't travelled past that church and reception hall since my wedding day 27 years ago!


My "ride" bike will always live in Seattle but I'm a lucky girl to have a back-up ride home in California!

Long-Term Survivors

When I first heard that term in 1994 it ended with a question mark – long-term survivor? My brother had already outlived the 12-18month death sentence handed out with his 1991 AIDS diagnosis, AZT – the miracle drug – had recently been discovered as having no real long-term effect and his doctor had no other way to explain why he was still alive and relatively healthy. Though skeptical, Bret enthusiastically embraced this early opportunity to help researchers understand what it meant to have survived this long.

Study and time have refined the definition. According to HIV/AIDS researchers, “’long-term survivors’, or ‘non-progressors’ make up about 5 to 15 percent of HIV-infected individuals. These people manage to maintain very low or even undetectable amounts of HIV in their blood and remain healthy without the dramatic loss of CD4+ T cells characteristic of most patients with HIV infection. ‘Elite controllers’ represent a special subset of this group, having HIV levels undetectable by standard viral load tests, without the use of antiretroviral drugs. Probably fewer than one in a hundred individuals infected with HIV meet this standard.”

San Francisco General was in a unique position to recognize the potential benefits of studying this group and began recruiting non-progressors in 2005.

“For many HIV researchers, elite controllers hold such a gold mine of potential answers that supporting them as a platform for both novel and hypothesis-based research is an invaluable investment. And, given the failures of recent HIV vaccine trials, the time to begin taking risks on elite controller research is now.”

UCSF researchers, led by Dr. Steven Deeks, have embarked on a collaborative effort with the Broad Institute at Massachusetts General Hospital in Boston and a host of other scientists, health-care providers, and AIDS service organizations to grow an international consortium with a goal to recruit 2000 elite controllers around the world.

This is where you come in!!!

Your donation to the ARI Breakthrough Riders provides the necessary seed money that makes this important research possible!

“We need to find these individuals, bring them in, collect the tissues, collect the cells, collect the plasma, have them come back every four months, do all the genetic and viral load testing. It costs about $5,000 per person per year to really do that,” says Deeks. “We are talking about serious money, millions of dollars a year just to find these interesting people and then provide everyone in the world access to the cohort.” Then, there is the high-risk, shot-in-the-dark, innovative nature of some of the research to be done. “That’s just not the kind of research that the NIH has been funding.”

“Elite controllers are not cured,” explains Deeks, “but they are as close to it as possible. We think of them as being like individuals who have had cancer and are in remission. So, we think of elite controllers as the reasonable goal for the treated population.”

I cherish every day of those extra years with my brother. Imagine the difference that gift of time could make in the life of a teacher, a mother, a leader, a child.

Read the full story, including quoted text: UCSF Researchers Study Elite Controllers, So Much Promise Requires Risky Research

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