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Bettina's Studio

My people, my pitbull, my pictures, my Parkinson's

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Team Bettina

The home page for all things related to raising funds for better treatments and an eventual cure for Parkinson’s Disease.

We Do Not Fund Research

CIMG2151In this very silly photo of me and my friend-since-forever-and-ever, Summer, I did not know. It was July 4th weekend, 2006, and just three months prior, I started to feel a tiny spasm in my right hand – between my thumb and my forefinger.

In the image I’ve posted of me and my mom at the beach, I did not know. It was Christmas of the same year, 2006.

About two weeks after that photograph was taken, my parents came to visit me in Washington, DC. My mom and I got up before dawn and took a taxi to the National Institutes of Health, where I underwent a four-hour series of tests. Some silly, some humiliating, some just annoying.

And then a doctor – a woman who couldn’t have been much older than I was at the time, 34 years old – sat me down in a tiny little room, gave a funny little sigh and said, “Well, it looks like you have Parkinson’s.”

Just like that.

I am approaching my eight-year “anniversary” with this disease, and I’ve been actively fundraising this entire time, to support research and treatments that will make my Parkinson’s easier to manage.

What I have realized is that however important the research and “cure” (I say it with air quotes because I don’t see it as a real possibility in my lifetime) for Parkinson’s are, so is managing the day-to-day of this disease.

That’s how I got involved with the Parkinson Foundation of the National Capital Area. Yes, it’s a mouthful – and if I use its acronym, PFNCA, not many people know what I’m talking about. But those who do, know how vital it is to their lives and to their every day functionality.

The money I am trying to raise – through the sale of my photographs – stays local. It helps people in the so-called National Capital Area (Maryland, DC, and Virginia) manage their Parkinson’s by providing dance classes, exercise classes, speech classes, and support groups….at NO CHARGE. Free to attend, free to participate, free to get the support they need when they’re paying so much for medication, treatment, doctors, diet, you name it.

I’ll continue to do the Unity Walk in Central Park each year, because the money I raise for that organization goes to supporting the big guns – Michael J. Fox Foundation, National Parkinson Foundation, etc. We need that research. We need better treatment. We need a cure.

But on a daily basis? I feel compelled to help the PFNCA. If I sell enough of my photographs to support a $100 contribution, that means 10 people can take a dance class at no cost to them. If I can shell out $200, maybe we can spring for another support group in an area we haven’t covered yet.

Life before the pictures attached to this post doesn’t really exist anymore. But the rich life I’ve lived since is because of the people who have supported me every day, whether grim or glorious. Everybody deserves that kind of community – Parkinson’s patients and their caregivers alike. Until a cure comes along, that community is better than any medicine!

(Okay, not any medicine, but most medicine. Especially the stuff I take. And no side effects from free dance classes! Except you feel more limber. And maybe you can touch your toes. You might freeze in that position, but you’re finally touching them!)

Phirst Philanthropic Photos

Back alley, Paris
Back alley, Paris

My nascent foray into philanthropy has enjoyed a successful day! Mr. Ford came to Art Beat Gallery this morning and purchased a large, framed print of Morning Reflections and a smaller print of Back Alley, Paris. Ten percent of the profits from the sale (in this case, $9.00) will be added to the amount I donate each month to the Parkinson Foundation of the National Capital Area. I would have started with a check in October, but the modest $4.00 I raised from the sale of greeting cards (thank you Mr. Fotos and Ms. McCluskey!) was modest enough that I thought I would wait until business picked up a bit.

Here’s how it’s going to work (at least for the foreseeable future – or until I get a wealthy patron who subsidizes my creative work and allows me to give away millions a year to Parkinson’s organizations):

  1. On the 30th of each month, I’ll total up the donations and write a check to the PFNCA.
  2. I’ll report the amount here on the blog so you can all keep track.
  3. I’ll also announce sales throughout the month so I can properly thank my patrons!
  4. Because of the fees and commission I pay the gallery monthly, the amount I’m able to donate from gallery sales (10% of the profit) is less than from my online sales (80-90% of the profit), where I can sell my images directly.

Here’s hoping this is the beginning of a very successful endeavor!

 

Adventures of a Burgeoning Philanthropist

If I let Siri have her way with my dictated notes, this post would have been titled, “Adventures of a Bludgeoning Philanderer.” As interesting as that sounds, my topic of focus today is philanthropy. I’m certain there have been, at some point in history, a few philandering philanthropists. Not sure about the bludgeoning piece – that’s a bit Law & Order: Charity Police for my tastes.

Anyway…the president of the organization on whose board I sit (this image gives me giggles every time – forgive me), called to ask if I would represent our organization at a rather important event. I said yes immediately. Because I was excited. Because I was honored. (Because I like to pretend I’m good at hobnobbing with the one percent, although I’m most definitely a proud member of the other 99.)

IMG_3396This is me dressed for philanthropization. Philanthropishion? Philanthing? Est? Er? Whatever РI had a decent  dress for the occasion, thank goodness.

I arrived and started introducing myself to people immediately. Those who know me well know that I speak extremely quickly, which is a good thing, because you really can’t take your time when you’re introducing yourself as BettinaChavanneWithTheParkinsonFoundationOfTheNationalCapitalArea. They actually had to shrink the font on my name tag to fit that all on one 2.5 x 3.5 card.

Luckily, my tremor worked in my favor (who keeps scheduling¬† these cocktail hours during my “off” times anyway?!). It was evident whom I was representing – and instead of my shaking making me self-conscious, I think it relaxed people a little bit, and made it easy to talk about the PFNCA’s mission and why it’s so important.

Aside from the man I met who kept asking me when dinner was starting, and upon learning I was not one of those who was invited to dine strode away to chase a passing tray of hors d’oeuvres, I think my first charity function went fairly well.

We’ll see what they trust me with next. If all else fails, there’s always bludgeoning philandering. Or burning Phil entropy. Or virgining plant trophy….

 

Photos Phor Philanthropy – Pheaturing Phrance

Photography Phor Philanthropy

I’ve finally launched my Prints for Parkinson’s campaign! The proceeds from the sale of every print in my shop will be donated to the Parkinson Foundation of the National Capital Area (PFNCA) – www.parkinsonfoundation.org – of which I am a member of the board of directors. The organization provides communication, education, and support programs – AT NO CHARGE – to our constituents: people living with Parkinson’s (like me!) and our families and care partners.

I’ll be releasing a catalog of prints soon, and will be recording all the donations on my blog. Forward the link to your friends, your friends’ friends, and to anyone who needs art for their office/industrial space and wants to invest in a vital community cause!

Follow this link: www.etsy.com/shop/BettinaStudio

Louvre, Rain

Photos like this one are available, beautifully framed and matted, in my shop!

Striking a Pose

I went to see my orthopedist the other day to check on the progress of my hip. He prescribed a cortisone shot to try to stem lingering pain I’ve been suffering. I made a joke about timing the shot right so the doctor wouldn’t have to chase a moving target.

“It’s true. You’re striking,” said my ortho. “I’ve never seen a Parkinson’s patient like you before.”

I put my “Aw shucks” face on and smiled. Wow, I thought, what a compliment from my ortho! He must think I look really fantastic compared to all his other patients. And he sees a lot of patients.

“It’s striking, the difference,” he said, shaking his head.

Striking! That’s me! I am one hot number, I thought…oh wait…

That’s when I realized what he meant. What is striking is the difference between my “On” periods (the hours of the day when the Parkinson’s meds kick in) and my “Off” periods (the in-between times). I was standing right in front of him, as still as a stone. But a few months back, he’d seen me holding the edges of my hospital bed to keep from shaking myself onto the floor.

Even my own neurologist, who sees me every three months, has said to me, “If I didn’t know you have Parkinson’s, I would never believe it.”

Except…

There’s a teeny tiny problem with not “looking sick,” a condition many people experience. Especially for those of us who are still relatively young and working full time. We look “fine” most of the time. Because we have to. But there are times when we’re not.

I’m not writing this as a pity post. Hardly. I’ve been fighting this disease for more than seven years – I’ve developed quite a sense of humor about it. (Anyone for a game of Operation! or darts?) But I thought it was important (for my neurologist – and in honor of my friends who “look fine”) to show you what Jekyll and Hyde really looks like. I think you’ll find the difference…striking.

 

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