AIDS/LifeCycle benefits, and is jointly produced by, San Francisco AIDS Foundation (Tax ID # 94-2927405) and L.A. Gay & Lesbian Center (Tax ID # 95-3567895), each of which is a nonprofit, public benefit corporation recognized as tax exempt under IRS Code Section 501(c)(3). Donations to AIDS/LifeCycle are deductible for income tax purposes, to the extent permitted by law.
A Second Chance at Life.
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What's the value of a second chance at life?
As an HIV positive man who has benefited from lifesaving treatments and services, I asked myself that very personal question. While the answer can't be counted in dollars and cents it does make sense to give back.
From June 1-7, 2014, I'm bicycling in AIDS/LifeCycle. It's a 7-day, 545-mile bike ride from San Francisco to Los Angeles to make a world of difference in the fight to end HIV and AIDS. I've set a very ambitious goal to raise $54,000, a thousand dollars for each awesome year that I've been alive.
Here's why. According to the World Health Organization:
- HIV is the world's leading infectious killer.
- Thirty years into this epidemic we have lost 25 million people.
- An estimated 1.7 million people died of HIV/AIDS in 2011 but combination antiretroviral therapy (ART) stops the HIV virus from multiplying in the body
- There are 10 million people in low and middle income countries that are using ART therapies BUT 26 million people will require access to antiretroviral drugs in 2013.
- Mother to child transmission is almost entirely avoidable but in 2011, 44% of pregnant women living with HIV have not received the most effective drug regimens.
- An estimated 3.3 million children are living with HIV.
Ther great news is that there are several effective ways to prevent HIV transmission. We also know that those who are effectively managing their disease are 97% less likely to transmit it to someone else. Knowing your status and getting treatment is vital. It means a better quality of life for people with HIV and protects others from infection.
With your help we can help give millions a new start, a second chance at life. Please give generously.
Get facts on HIV/AIDS. For the latest information on HIV/AIDS go herehttp://www.who.int/features/factfiles/hiv/en/
My Personal Web Log
The Ask 2.0
In sales, and sometimes in life, it comes down to the ask.
The casino event that raised $1,600 at tonight's Sales 2.0 Conference was a direct result of such an ask. Seven years ago I made the simple request of Gerhard and Larissa Gschwandtner. It was to join me for dinner. I wanted to Gerhard to speak at our first conference. After a bottle wine, and talking about almost everything but business, he agreed. He also agreed to take over the helm of the conference when the company I was working for decided that it was not in the event business.
Last June, I asked a question of myself.
Being HIV positive for 10 years I knew that I wanted to give back to the organizations that have been helping me live a fuller life. The question I asked was this: What's the value of getting a second chance at life?
That's when I decided to do two things: ride 545 miles from SF to LA in the AIDS/LifeCycle and along the way raise $1K for every year of my life in support the SF AIDS Foundation.
To help me get to $54K I asked Gerhard and Larissa if they would support me and tonight's event was the result. I closed today's Sales 2.0 Conference by doing something I'd never done before - come out as positive to a mostly straight and completely unfamiliar room. I had pushed beyond my comfort zone. I felt exposed.
You could hear a pin drop. I could feel their empathy towards me. While nothing was uttered, a lot was said. It was quite a moving moment that I quickly passed through. I closed the session recounting to the audience much of what I have just retold you about how the conference got started and how that led me to being on stage before them. I asked attendees to help me close the final gap saying "every dollar that the house takes in goes directly towards my efforts. All I ask of you is that you have fun, network, have a drink or two on the house and gamble relentlessly."
Today, I ventured outside again.
Aria, the new company I work for, is launching a social good program; AIDS/LifeCycle is their first beneficiary. Together, with the help of the Aria team, we have decided to tell my story. In so doing this also makes me their first employee to be publicly out as either Gay or HIV positive. It's a leap of faith for both parties. I am grateful for the support of my boss, Jon Gettinger, and Aria's CEO, Tom Dibble who like my father, have backed me "100%".
I am thankful to have people like Gerhard, Larissa and so many others in my corner. I literally could not do this without them.
Yesterday I biked 104 miles over 6,700 feet, hopped in the car, went to Meredith Loring's, arrived mid-party, showered, swapped clothes, chatted up some amazing people (seriously, their friends are a "It's a Small World" of smarts, fitness, beauty and success), prepped for today's ride with Jonathan Goodrich, woke up at 6am, rode out at 9:30am, logged in another 55.5 miles and 5,200 feet. I am now at home, writing this post.
It struck me mid-party about how busy and full my life is and how blessed I am. I thought about people who aren't here, namely my junior high track coach, Harry Berg, who died of cancer in his mid-thirties.
When he was diagnosed, he was a scout for the Seattle Seahawks. Through my brother, Corky who also works at the Seahawks, he asked to see my twin, Jim and me. It was an awkward moment but we went because he asked and because of the man he was. To give you a sense: He was 1 part Magilla Gorilla and 1 part Race Bannon - blonde, hairy and hulking. He also was wicked smart and he had the grace to take an awkward eighth grader --who longed to be but would never become, a respectable athlete-- under his wing and show him a thing or two about life, track and shooting basketballs.
The conversation was pure Harry. Not dodging the obvious, he hit it head on, explaining "what's going on." In that discussion, he talked about living and burning it up like a shooting star. That was 32 years ago.
This weekend I burned it up. And thought of people, like Harry, that still give me cause for reflection. And in that moment, I can almost touch heaven.
It all started with an ask...
Last fall, I asked Jason Lankow, CEO of Column Five, if he would donate $1,000 to my AIDS/Lifecycle fundraising efforts. He suggested donating something different, something amazing: His time, his employees time. The result culminated in the site that we launched today. "My Status Is NOT a Secret" goes beyond mere fundraising to humanize the HIV experience through powerful stories across status, gender, race and sexual orientation.
We are all living with HIV. The goal is to live better.
Ending HIV starts with us. The site and campaign seeks to change the conversation around HIV. We owe it to ourselves and our communities to know our HIV status--whether positive or negative--and to be open to conversations about that status.
Thanks to the team and individuals who stepped up to share their time and their very personal stories. Through them I hope we can move beyond stigma and more fully embrace the human experience − which both separates and connects us all.
Explore, comment, share and--if compelled--donate.
Conversations from the road - Feb 3, 2014
Before starting my new job at Aria Systems I took a road trip to LA to meet with Column Five, who are donating 200 hours of their time to help me in my fundraising efforts. Their CEO drafted a pitch proposal to his partners and under the "why" he simply wrote "because we love Parker." Wow. The very least I could do is get face to face with the team lead, Ian Klein, who lives in Los Angeles.
On the way down, I retraced parts of AIDS/Lifecycle route, stopping overnight in Paso Robles. I pulled into the hotel at just after 11am, which afforded the entire afternoon to a bit of sightseeing on two wheels. I dumped off my bags, hopped on the bike and headed towards San Miguel, an awesome speck of a town 11 miles north of "Paso" - as the locals call it.
Mission San Miguel Archangel hosts the final rest stop on day three of the Ride and it's one of my faves. I took River Road north, which winds up a now dry creek bed. The road undulates and while not particularly scenic offers a super fun ride that invites easy 20+ mph speeds.
Forty minutes later I was at the church where I spent some time in the quiet confines of stucco and stained glass. I thought about what lies ahead. I lingered over names of people that aren't here. I poked around the corner and found the cemetery. To be sure it wasn't much more than some dirt, cacti and few headstones under the watchful eye of an Iron Christ but it had a quiet dignity about it.
How San Miguel survives is a miracle. It's more of an old west movie set than a functioning town. It has no visible reason for being even as a bedroom community of its more adult neighbor 10 minutes south. I rode lazily past the general mercantile, the deli, the two saloons, and a hardware store displaying lawn mowers as if there was much lawn to mow in nearby tracts of rock and rubble.
Before heading back I grabbed a latte at the Coffee Station, a converted postage stamp Atlantic Ritchfield, which showcased an authentic gravity fed gas pump from the Thirties. The shop is owned by an affable guy named Luis, who has bankrolled his dreams and put it into what is San Miguel's version of a start up. We talk. He explains his hopes for this part coffee, part burrito stand off the beaten path. He's counting on goodwill and his catering orders to supplement the morning coffee rush, which he admits isn't enough to keep the lights on. After 20 minutes I saddled up and wished him luck but wondered how he was going to make a go of it.
And I rode out of town I left the moment behind me. It was the kind of interaction -- the heartfelt collision of world's -- that seems to happen daily during the Ride. Luis is the kind of man and San Miguel is the kind of town you want to root for.
I plan to stop by on my return trip in June if only to reconnect once more and steal a glance at Claire, the three month old, pretty in pink, snuggled between his arms.
Things that Matter.
My mother, Alix, is 85 going on 30. And while she may not have figured out email she's pretty much nailed "the Google", as she affectionately has named it. She, like her son, is a curious sort. She's enjoyed a pastime of torturing her six boys with her "no question is off limits" joie de vivre and has just discovered -to her delight- that all answers are now at her fingertips.
Having already broken news of my HIV status to her in person, she was (really) eager to read my Facebook note (see copy in blog post below) which talked about my passion for the ride. Apparently I wasn't getting her copy fast enough. Phone rings. It's Mom:
Hon-EEE, it's me. I love the Google. I found your note. SOOOOO many comments. I THINK it should be published. And since you mentioned them, I've called Suzy and Al and I THINK you should send them a copy.
First, I seriously need to reexamine my privacy settings. Second, I didn't mention "them" but DID reference a "neighbor" and being "born". Good enough for Mom who's always been a bit liberal with the facts.
As a point of my disclosure was to get more people talking about status - yours, mine and everyone's - it was also good enough for me. Mom's take-the-bull-by-the-horns approach is another reason to love her more. So, per her "suggestion" I sent two emails off. Two really great things happened. I got two emails back in return.
The first from Suzy Moery, the mother of David, our neighbor who died at just thirty years of age. I wrote her about the final two times I saw David and how much I appreciated them and the gifts I received from him during those visits. I also told her about how disappointed I was when I seroconverted. Her reply:
Parker, thank you for sharing. I'm so sorry that you (or anybody) have to deal with this, and I'm horrified to see the word 'shame' connected in any way with your feelings... ...My first thought, when your mother told me, was that the medical profession has learned a lot in the past twenty years, and that you would be able to manage the disease successfully. My second thought was that time is on your side -- I think. I hope. David taught us all lessons in dignity and tranquility in the face of disaster, although his experience with his partner must have given him insight as to what was coming. And I must say that his attitude helped me, at least, keep going... ...I hope you know that I applaud you and thank you for your 'birthday gift'. Love, Suzy
The second from Al Skinner, the now 89 year-old Harvard-educated doc is a lifelong skiing and hiking buddy of my Dad's and was on-call when I came into this world. Little did I know how lucky I was.
As you will see, Dr. Skinner is still sharp as a tack and not at a loss for the details:
Thanks for sharing your essay. The history of exchange transfusions for Rh incompatibility was short in 1960. I participated in my first as a medical student in 1950 at Boston Childrens Hospital. I was the second or third Seattle pediatrician to have the training. Alix's obstetrician, Glen Rice (still living at Horizon House, Seattle) did the appropriate tests to identify babies at risk. We were forewarned. Dr. John Hartmann, a newly arrived pediatric hematologist, was available and we had prepared. After supporting your father (who had been in the delivery room for your older brothers' births at my urging) we arranged your transfer to Childrens where all was ready. Jack Hartmann and one twin at one end, I and the other at the other end of the procedure table, placed catheters in the umbilical veins and withdrew and replace blood, 20 cc at a time. All went well and you two were later returned to Swedish and your mother.
Clearly on a roll, he offered up this tidbit about my mother's parenting prowess:
Your mother devised a unique system for managing her (six all under the age of six) boys. The older twins were cared for on local time. The middle pair were on GMT -11, you and James on GMT -12 (I think).
I once referred a new mother-to-be of twins to Alix for advice on coping with twins. I didn't mention that she was also coping with horses, a donkey and a pig. I think the young mother decided her twins were manageable...
...There is enough drama in the Trewin family history for a television series. Sarah and I are privileged to have been on the edge of it.
Thanks to Suzy Moery and Al Skinner for letting me share their words. They matter so much.
They were fixtures of my childhood in Redmond -- two decades before Microsoft would make it a household name. 1960's Redmond was a one stop sign town where you were more likely to see a loose horse than a late model Ford. Doors were left wide open and kids roamed freely between them. Betty at the V&B grocery was the source for all the news that wasn't fit to print and a guy named Wayne could be counted on for a couple of gallons of cheap gas, one of the widest of smiles you'll ever see and some free advice along the way.
Redmond was rowdy, rough hewn, hokey and all heart. And, forty years later it's still a good place to call home for no other reason than the Suzy's and the Al's who live there and have always had my back.
In the Week...
Since posting my birthday note coming out about my HIV status it's been shared thirty times and been read by over 130 of your. You've made almost as nearly comments. And while its primary intent wasn't fundraising, over $12,000 have been donated to my AIDS/LIfecycle efforts.
Your support has brought me close to 50% of my overall goal of $54,000 - or $1,000 for each year of my life.
Yet, in the years ahead what will linger are the words from friends half a world away, work mates who reached across our 9-5 lives, family members who I continue to hold close, and hometown peeps who I remember fondly but haven't seen in years.
I've received dozens of texts, emails, phone calls checking in, sending best wishes and pledges of support -- each one sweeter than the next. And you've shared your own stories of loss, perseverance and hope: from those affected by HIV, managing diabetes and surviving cancer. It's been an incredibly touching and powerful week.
I can't say "thank you" enough.
Today is My Birthday (1-6-2013)
I'm 54 years young and 10 years old.
I was born in Seattle at Swedish Hospital at 5:52pm, on January 6th, 1960.
I nearly died at birth. Over the course of four pregnancies, my mother's Rh-negative blood had created antibodies that began attacking my Rh-positive body. I was blue, lacking oxygen and in need of a near total blood transfusion. Rushed across town from Swedish to Children's Orthopedic Hospital, I received lifesaving treatment.
Forty-four years later, at 7:15pm, on January 8th, 2004, I found out that I am HIV positive. I sat in the Castro district public health clinic waiting for my umpteenth set of HIV test results. Matter-of-fact and direct, the social worker looked the lab report, looked at me, looked back at the results and announced: "Well, they came back positive. Do you have any questions?" You betcha! Like, "What the f?" combined with "How?" And finally, "Now what?"
Without a plan, I just moved forward. The next day, I packed up the Saab and headed south, keeping a trip to see friends in LA. It was the longest, loneliest 7-hour trip of my life.
When my childhood neighbor died of HIV in 1992, my Mom politely suggested that "I not put her through that." As I headed south that conversation replayed in my head like a bad pop song. I didn't want to think about it but I couldn't help it. Fueled by Josh Groban and Charlotte Church's "The Prayer" as my soundtrack, I lasted until the town of Gorman before I finally let out the good, long cry.
In that moment, I understood my mother's pain. No matter how much you love your kids, you can't ensure their safety. You let them go and life happens. We snowboard, ski, skydive, explore, hike, run, walk, ride, drive, glide, skate, swim, sail, climb, and fall in love anyway. Experiencing beauty and exhilaration are part of what makes us truly alive. The best that parents can hope for is that their kids get to breathe it all in and then manage the risk necessary to keep themselves safe along the way.
For the past ten years I've been managing a different kind of risk, associated with disclosure.
And while it's invaluable to have the love and support of family, it's taken me this long to tell them about my status -- which I did over the holiday break. I heard their concern and felt their love which means so much. Yet I also heard "I expected it" which gave me a bit of an 80's flashback where "being gay" equates with "getting HIV". And with 50% of new U.S. infections now occurring in the straight community, the real truth is that "being sexual" doesn't have to mean "getting HIV".
To make this a reality we all still have to clear some hurdles. Thirty plus years into the epidemic, stigma for people living with HIV exists. Forty-seven out of 50 states have laws on the books that discriminate against HIV positive people.
Stigma rears its ugly head in both alarming and seemingly innocuous ways. Late last month, Justine Sacco, the (now former) corporate communications director of http://Match.com, tweeted this: "I'm going to South Africa. Hope I don't get AIDS. Just kidding. I'm white!" In her apology, it looks like she still doesn't quite get it, explaining that she "hadn't witnessed AIDS first hand." As if empathy, compassion and understanding require an eye witness as a prerequisite.
Likewise, Donald G. McNeil Jr.'s recent New York Times article on rising HIV infection rate, writes that while it's difficult to catch HIV from positive people on medication "a problem" exists because "not all men on the drugs take them every day." If you spend anytime reading the venerable New York Times, you might be led to believe that HIV positive people (1) brought the disease on themselves, and (2) can't be trusted.
Stigma can also be insidious. It's at the root of tidy yet demonizing acronyms that separate the have and the have-nots in the gay social dating scene: "DDF," "clean," "UB2," and "looking for same." No one wants to be branded "diseased", "dirty", "undesirable" and "looked past."
Words matter. They encourage inaction and silence. And that's not healthy.
At best, for the convenience of comfortable labels, we diminish our own humanity by discarding the individuality that makes us unique, special, and one of God's creatures. It fosters a safe haven of separation in the them-versus-us mentality. When stigmatic thinking abounds, it's understandable why some choose to remain enigmatic. For many, it's just more comfortable to live with plausible deniability. The repercussions amount to a major health concern. Today, twenty percent of people with HIV in the U.S. don't even know they have it.
The healthy course is to get tested, know your status, and, if needed, get treatment. The weight of scientific research shows that this provides two huge dividends: longer and higher quality of life, and much lower transmissibility. Those who are effectively managing the disease are 97% less likely to pass the disease on, yet just over 25% of positive people are effectively doing this.
If people are going to be motivated to get the treatment, we -- the collective we that includes us all -- need to end the stigma that fuels the spread of the disease. Ending that stigma starts with me, which is just one reason for me to finally tell my story.
The other is this: If you do test positive, it is important to know that you are not alone.
For the past ten years, I've had the incredible support of friends and of people that I didn't even know -- the tireless leaders and volunteers at the SF AIDS Foundation, Northwest AIDS Foundation, Gay Men's Health Crisis, LA Gay and Lesbian Center, and Whitman Walker Clinic and others. Because of them I have been afforded federal support, medications, and counseling that continue to improve my quality of life. I have been blessed, as these footholds have literally given me another chance at life.
The question I'm asking myself is: what's the value of my second chance at life? A thousand dollars per year? A hundred thousand? What my employers pay me? Is it the love I get and can return?
While it may be impossible to measure this in dollars, it can be measured in sense.
It makes sense to give back to those organizations that have been there from before HIV was named, and that are still leading the way today. They are putting in place bold new initiatives that go beyond the politics of sex, race, and sexual orientation, and focus instead on public health for all. We need to look beyond the fortunate few to the ones who aren't supported, who can't afford proper care and are unable to access lifesaving treatments.
The SF AIDS Foundation was a force behind the Ryan White Care act so that more can have access to programs and support. They pushed for the life-sustaining, though politically incorrect, needle exchange program that has been a model for other programs around the world. They helped enact socially conscious, non-discriminating legislation in hiring and housing. They provide meals and housing and education and legal advice and testing and, yes, even a colored condom or two.
Their goals continue to be big. The SF AIDS Foundation's focus on testing and treatment aims to reduce new infections by 50% in 2015 and nearly eliminate them in 10 years.
This June I am again riding in the AIDS LifeCycle, a 545-mile charity bike trek from San Francisco to LA. As part of this I have pledged to raise $54K.
To do this, it is necessary to be authentic with my own story. I wish to raise $1,000 for each awesome year I have lived so far. It's the least I can do for those that have done so much.
The better news is I've never been healthier. My latest blood test showed that all major indicators are within the normal range, and for that I am thankful.
I'm 54 years young, and 10 years old.
Today, two injections are all that's required to avoid the Rh-induced anemia that threatened
A Second Chance at Life
What would you do to give people a second chance at life?
From June 1-7, 2014, I'm bicycling in AIDS/LifeCycle. It's a 7-day, 545-mile bike ride from San Francisco to Los Angeles to make a world of difference in the fight to end HIV and AIDS.
Here's why. According to the World Health Organization:
HIV is the world's leading infectious killer.
Thirty years into this epidemic we have lost 25 million people.
An estimated 1.7 million people died of HIV/AIDS in 2011 but combination antiretroviral therapy (ART) stops the HIV virus from multiplying in the body
There are 10 million people in low and middle income countries that are using ART therapies BUT 26 million people will require access to antiretroviral drugs in 2013.
Mother to child transmission is almost entirely avoidable but in 2011, 44% of pregnant women living with HIV have not received the most effective drug regimens.
An estimated 3.3 million children are living with HIV.
There are several effective ways to prevent HIV transmission:
practice safe sexual behaviors such as using condoms;
get tested and treated for sexually transmitted infections, including HIV;
avoid injecting drugs, or if you do, always use new and disposable needles and syringes;
ensure that any blood or blood products that you might need are tested for HIV.
We can affect change. We can give people a second chance at life.
Please give generously. Get facts on HIV/AIDS. For the latest information on HIV/AIDS go here http://www.who.int/features/factfiles/hiv/en/