Hug the giant happy Hepatitis B liver

Ignorance is Bliss Until Someone You Know Gets Sick

I am disheartened by your blog which defames and pokes fun at the Hepatitis B Foundation’s grass roots effort to raise awareness in their hometown community at the monthly First Friday celebration in May.

You say that the Foundation “hijacked the city’s First Friday celebration of the arts to promote its own health care agenda.” As their public relations representative, I have to say this is untrue.

I spoke to Bob Quon today. He is the First Friday Doylestown Chairman. He said, “Nonprofit organizations in our region are invited to partner with First Friday. Every month features a different cause. They have brought education, awareness and a voice to our local community and the community has responded very well.” He said, “We are proud to have all of them participate in First Friday.”

Just some of the nonprofit causes that have been highlighted at First Friday Doylestown include: Autism, ALS, Breast Cancer, CB Cares, Tabor Children’s House, Bucks County SPCA, Doylestown Fire Company, Central Bucks YMCA, National Organization for Victim Assistance (NOVA), and Bucks Association for Retarded Citizens (BARC).

In fact, Joan Block, Co-founder and Executive Director of the Hepatitis B Foundation said, “The Hepatitis B Foundation truly appreciates the support it receives from the community. We are proud to be a resource for students, scientists, healthcare providers, and especially those families affected by serious liver disease.” She said, “We are honored to participate in First Friday Doylestown since May is National Hepatitis Awareness Month. We have the opportunity to give back to and educate people in our own back yard.”

Mr. Trexler, you intimate that you "wouldn’t touch [the O’Liver mascot]” leaving one to assume that you fear getting sick. If this is accurate, then little do you know.

Hepatitis B is the world's most common liver infection. It is caused by the hepatitis B virus (HBV), which attacks and injures the liver. It is transmitted through blood, unprotected sex, shared or re-used needles, and from an infected mother to her newborn baby during delivery. Hepatitis B is NOT contracted through casual touching.

In fact, worldwide, 2 billion people (1 out of 3 people) have been infected with hepatitis B. 400 million people have become chronically infected (which means they are unable to get rid of the virus). An estimated 1 million people die each year from hepatitis B and its complications. In the United States, over 12 million people have been infected (that’s 1 out of 20 people). Almost 100,000 new people are infected with hepatitis B each year. An estimated 5,000 Americans die each year from hepatitis B and its complications.

The Hepatitis B Foundation is dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Their commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public. There is a lot that still needs to be done to improve prevention, education, and access to medical care and treatment.

There are many facts about hepatitis B that you may not be aware of. To learn more go to www.hepb.org.

To learn more about the great things First Friday Doylestown are doing, go to http://firstfridaydoylestown.com.

It has been brought to my attention that the quote attributed to Bob Quon in my earlier comment is inaccurate. His exact words were, "Local well established nonprofit organizations in our immediate region are invited to be showcased during First Friday. Every month features a different cause. The nonprofits have brought education, awareness and a voice to our community and the community has responded very well. It is our way of giving back to the community.”

To be clear, it's the mascot of the Foundation, and from what I could tell he's a happy, healthy liver.

I think you bring up a good point though - what is first Friday about? From what I can tell, it's about getting a bunch of locals out so they spend money in town - no?

Sure, local artists get exposer, kids and adults protest wars and their various causes, but lets face it, the people that run Doylestown wouldn't have organized this event if they weren't getting some sort of financial kickback.

Everyone involved has an agenda, whether to increase awareness of a disease, their music, their politics, or their product.

The server's been a bit buggy today, so I want to make sure this for-some-reason-not-publishing comment from Brent (http://cyre2067.livejournal.com)got in the mix:

To be clear, it's the mascot of the Foundation, and from what I could tell
he's a happy, healthy liver.

I think you bring up a good point though - what is first Friday about? From
what I can tell, it's about getting a bunch of locals out so they spend
money in town - no?

Sure, local artists get exposer, kids and adults protest wars and their
various causes, but lets face it, the people that run Doylestown wouldn't
have organized this event if they weren't getting some sort of financial
kickback.

Everyone involved has an agenda, whether to increase awareness of a
disease, their music, their politics, or their product.

Gina, I hope that when I get the sickness unto death, the last thing to go is my sense of humor.

Brent,

Please allow me to clear up any misconceptions or insinuations that your comments imply:

1. First Friday Doylestown, Inc. operates as a nonprofit organization 501(c)3. FFD is an independent organization that is not aligned with any retailer, community, political, religious or local governmental organization.

2. First Friday Doylestown is run by volunteers from the community - some are owners of independent shops in town, but most are just residents. None of us are compensated.

3. FFD has had showcase nonprofit sponsors for the past three years and have not received "some sort of financial kickback" - ever.

4. FFD has turned away the big corporate entities that wish to pay money to promote their products.

5. FFD clearly states in its bylaws that it is a non-political entity. The protesters that you see on a FFD event have every right to express their beliefs - but be assured, they are not part of FFD.

6. First Friday Doylestown is about providing exposure for local artists, musicians and all that the historic town has to offer.

7. First Friday Doylestown has made a concerted effort to mandate that all showcase nonprofits only provide educational materials and move away from fund-raising.

Lastly, the FFD committee does not have an "agenda". Our goal is to provide a safe, fun and free family event for the folks in our community. We try to provide "something for everyone" - for the family, couples, teens and our senior citizens.

I hope this clears any thoughts that you may have previously had about First Friday Doylestown and I invite you to attend one in the near future.

Sincerely,

Bob Quon
Chairman, First Friday Doylestown

As someone who has spent all of his professional career working with charities, all I can to the good folks of Doylestown is--

People, lighten up!

Read the post. I mean, *read* it, and try to understand its point. It's not an essay on epidemiology, nor are there any accusations of kickbacks. It's a satirical riff on how a charity can be so wrapped up in its own mission that it loses a sense of context--namely, the cognitive disconnect between disease and a relaxing space apart for music and crafts.

If you're going to do PR for a charity, the first thing ya gotta do is understand your public.
The fact that my goofy post sparked such wild responses--Trexler defamed us! He's ignorant!--only underscores my point.

Like I said, I've been in this gig a loooooonnnnggg time, and if you think there aren't jokes among performers about "that time I took a gig and it turned out to be a proctology fundraiser" you really need to make a few new friends. The overheated response reminds me of the folks in my own small PA hometown who went apoplectic about eleven-year-old me buying Mad magazine at the corner drugstore. It's really not an attack on civilization to have a sense of humor about yourself--in fact, as long as we are angels made of clay, it's pretty much essential.

I feel I need to respond to the above comments both as a performer and as someone close to the Hepatitis B Foundation. I believe the comments in regards to your original post about the foundation were very protective because, Mr. Trexler, your post did not come off as funny or sarcastic. And I have studied stand-up comedy and theatrical comedy, so I am familiar with the subject. To the foundation, it read as an attack, whether you intended it that way or not. We know Oliver is not the most conventional mascot. Most of the time people don't even know what he is supposed to be. A lot of people think he is a giant fuzzy version of a bloody tooth, but the kids still want to hug him. We aren't the only organization with a strange mascot. The Red Cross has a big fuzz drop of blood. What the Hepatits B Foundation works to do, inform people about the disease and help those that have it, is not an easy task. For a disease that has 400 million chronically infected people in the world, most people have no idea what it is. So it's no suprise that the foundation would react to you insinuating that we really don't have a right to mix with the arts. As an artist myself, I would much rather be associated with an organization that is trying to help people rather than one just trying to make a buck. The main thing I think you should take away from this message, though, is that the next time you use the Hepatitis B Foundation for satire Mr. Trexler, could you make it a little more obviously satirical?

"And I have studied stand-up comedy and theatrical comedy, so I am familiar with the subject."

It's a common, if not admirable rhetorical strategy to flip a criticism back on the person who made it. Glad to see a charity so adept at this tactic.

"Most of the time people don't even know what he is supposed to be. A lot of people think he is a giant fuzzy version of a bloody tooth . . . "

Um, wow. You guys are hardcore. If someone told my charity that people thought our PR symbol was a giant bloody tooth, I'd see what I could do to clarify the message.

It's funny--interesting funny, not ha ha funny, since I'm dealing with a comedy scholar. When I posted a comment about the Red Cross way back when, it prompted a lighthearted yet constructive conversation. They even ended up incorporating my point in an internal review, and I came away with a refreshed respect for their team. They were confident enough in their mission that they didn't assume that a person so audacious as to question them must be stupid and uncaring.

I have to say, when I wrote my original post I did it with a bit of affection--after all, I figured, a charity that would send out a giant liver had to have a keen sense of the absurd. Clearly I was mistaken. What a burden it must be to be so righteous.

Mr. Trexler,
Number one, thank you for complimenting my ability to flip a criticism. I have learned from the best.
Number two, I'm really not trying to sound rightous. It's just that what is said about the Hepatitis B Foundation is taken very personally by our employees because we are the foundation. We aren't the Red Cross. We aren't anywhere near as big or as well funded. We have nine employees. Nine. We have one office, located in Pennsylvania, with nine employees including our president and co-founders. Our board of directors has more people than the office does. And we try, from our small office, to reach out to people across the country and beyond when we can. So when something negative is said about the foundation, whether it be said with any amount of intended affection, feels like a personal attack on each one of our employees. It hurts us, that's why we respond the way we do. And when negative comments are made by someone in what could be considered a position of power, say an executive vice president of academic affairs at a major university, it makes us worry that such a persons thoughts and comments on our work could undermine or make it look unimportant in the eyes of others. Our job is not easy. Of the nine of us, four share the responsability of answering over 100 phone calls and emails from people who are infected with Hepatitis B, most of whom are scared and don't know what to do. We know our mascot is avant-gard. We know a lot of people don't know what a liver looks like, especially when it's six feet tall and covered in red fur. We're not blind. But he does what we need him to do. Draw attention to us. And, fortunately or unfortunately, it has drawn your attention. And if you feel we are overreacting, so be it. I just wanted you to know why we are reacting in such a way. Your criticizing our work, and all nine of us, whether you intend to or not. And you don't seem to appreciate criticism either, as can be seen in your response.

Actually I welcome criticism and vigorous debate. I learn nothing when someone agrees with me, and there's little anyone can say bad about me that I haven't said to myself 50 times.

Personally my response to this whole thing has been bemusement descending into sadness, as I saw an otherwise noble enterprise make mistakes that have taken all too many organizations into the ditch.

What troubled me was not anything said about me, but the mode of response itself--in particular, the decision of your public relations person to respond with a personal attack and overwrought allegations. It's an approach that can be satisfying within the immediate group, whether for-profit or non-, but as a general rule it's also a sure-fire way for a small venture to stay small.

There are, as the song goes, two paths you can go by: attack or absorb. The former is the path often chosen by lawyers who think that their job is tear down the opposition at all costs. But that's not what the best lawyers do--the best transactional lawyers are builders, connectors, relaters; they use law to transcend law by bringing folks together in a common enterprise. Morever, the attack mode is a luxury that most charities cannot afford. It sends all sorts of bad messages to potential supporters and alienates potential allies.

Beyond strategic concerns, there's also the more fundamental matter of what charity is all about. It is, at base, an other-directed enterprise. We strive not just to press our interests, but to see the world through others' eyes. When the default mode is to depict an outsider as stupid or malevolent--and to hold this response up as a model for others to follow--charity lapses into something more primal and destructive.

I see the routine here and imagine someone from the HebBF will respond by saying how I have not seen the world through your eyes etc. etc. Frankly, it's a game I have no interest in playing, so I'll be glad to let you have the last word by laying the smacketh down on me however you feel you must. I'll just close by saying that if your PR rep had responded with a lighthearted comment, even a fun in-kind jibe, you would have found a new friend.

As someone not involved with the Hepatitis B Foundation but very familiar with the work and nature of its PR person, I feel compelled to let you know that Gina Rubel is well known in our little town (and, indeed, throughout the state of Pennsylvania,which just named her one of its top 50 businesswomen based on her business savvy and charitable efforts) as a kind and generous soul, as well as a public relations expert. Her comments, I am sure, were driven only by her passion for those who help others -- such as the Foundation -- and her sincere desire to share information with you about the valuable work the Foundation does.

Jeff,
You have GOT to be kidding me.
I'm guessing that you didn't mean harm, but words have power, and yours were not well placed.
How is it that you see fit to even attack something so wonderful and helpful to a community as a First Friday event, and an associated program of partnering with important causes to create awareness in a friendly and well attended environment. This is about SUPPORT, not tearing down the potential for that support by writing something like, "I wouldn't touch it...." and how you think the HepB Foundation "hijacked" First Friday. That appears uninformed to say the least, not to mention inappropriate. The people behind First Friday have the best intentions at heart, and work tirelessly to bring this event to the public month after month.

As to the PR person/firm, as far as I'm concerned, that is EXACTLY the type of person/firm I would hire. One that would stand up, promote, and when necessary, defend their client.

And I simply MUST comment on your statement, "If you were a musician or designer, who would you rather have sponsor your event--a commercial business or a disease?"......hmmm, let's see, I AM a musician and a designer, and that question makes no sense to me. It's not an "either/or" first of all, and I would appreciate a sponsor with integrity, one that represents a product or cause that I believe in, be it commercial, or non-profit.