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!)

My Mom’s iPhone

I realized as I wrote the title to this blog post that “I got my mom an iPhone” sounds like the start of a really good country song…because so much could go wrong.

Mom and dad live in Old Lyme, Connecticut. It’s the kind of quaint town where you expect to see Julia Roberts riding her bicycle down the street while a quaint piano-based theme song plays in the background. My mom grew up there. Her father was the town librarian – there’s even a plaque with his name on it in the reference room! (For you kids reading this – a library is a building that has books – the kind that have paper pages with words on them.) My mom is an active member and fundraiser for the library and is the brains behind the Bookworm Ball – an annual themed event that raises money to keep the library alive and thriving.

This is a town where people go to the library to use the computers and the internet because they do NOT HAVE THEIR OWN COMPUTERS AT HOME. Breathe deeply – I know. I didn’t believe it either at first. Some of these folks still have phones that are physically attached to their houses! It’s called a “land line.” It doesn’t do anything other than act like a phone. And the # sign on the keypad means “pound,” not hashtag, as in #hashtag #pound.

Sorry – getting a little meta there.

It is into this environment that I am introducing the iPhone. Not just any iPhone. The iPhone 6. The large one. The one that looks like you’re talking into a piece of toast when you hold it up to your face. Speaking of which, the last time I called my mom on FaceTime, I spoke to her cheek the entire time because she couldn’t get the hang of talking to my face. Or maybe she couldn’t hear me. I’m not sure which. Also, I shouldn’t make fun of her because I’m the one who never figured out how to snorkel because being able to see clearly underwater and breathe at the same time were too confusing to do together.

My mom isn’t a total technology rube. She simply becomes incredibly angry when technology doesn’t support her goals to get things done in a simple manner. It is a shocking thing to see my polite and graceful mom begin to spew profanities the likes of which have not been heard since sailing vessels first crossed the equator, when she encounters a problem with the internet. Or Google. Or Microsoft Word. Or email.

I’m also slightly concerned that her new iPhone 6 will become a target of gossip in Old Lyme. I get the feeling that anyone who has even as much as a flip phone is referred to in hushed tones as a communist or a lesbian. And although mom vehemently denies it, I believe she spearheaded the movement last year to evict a member of the library board because that person purchased a Kindle. She does, after all, volunteer in the “Book Seller” – a real cellar (get it? Play on words! Those punny librarians!) from which a group of townsfolk sell used books. I bet they also store their pitchforks and the bodies of AT&T and Verizon Wireless salespeople there too. Cricket Wireless seems to have gone unscathed – but only because the locals think it’s a bug conservancy organization.

I’m KIDDING!

I deliver the new iPhone to my mom on Thanksgiving, when the family gathers at my sister’s house. My father will have his new phone as well – I ordered him some giant flat piece of electronic toast as well, though it’s not of the “i” variety. I’ll be interested to see what he’s done with his piece of technology.

As for mom, I can’t wait to start loading all kinds of apps on her new iPhone. Then I can go home and wait for her lovely face to appear on my phone when she calls to ask me: “What IS this APP?! The phone keeps asking me for my APPLE ID! WHAT IS THAT? Can you hear me? I don’t like how I look on the screen. Can you fix that?”

(Love ya’ mom!!!)

 

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

Why so many pictures of Paris? Because it’s my favorite city in the world. Lest you think me unoriginal, let me add that I am French. Although the French like to deny it come passport renewal time because I was born in Belgium. But that’s only because my parents happened to live there for a while and have a baby. But the Belgians, who are even weirder than the French (I know this only anecdotally from my friend, Rebecca, who lives there now, and who is thinking about becoming a Greek citizen) do not allow babies who arrive on their soil yet did not emerge from Belgian loins to be Belgian. Because Belgium.

So I’m French.

And American.

Perhaps I should go back to talking about photography.

France is quite depressing in the winter. After all, it is Northern Europe, a region that seems to be wrapped in a damp wool sweater for much of the year. Which explains the smell in the Metro. To conquer the gloominess that tends to set in, I like to get out and take pictures. Paris is the City of Light, no matter the time of year, and in most of these images, I managed to capture a bit of brightness. Not even steady drizzle and temperatures in the low 40s (Fahrenheit, of course) can dampen the city’s spirits. Well okay, maybe a little bit – a foggy camera lens and a runny nose kill the romance a bit, I have to admit.

I used to travel to Paris at least once a year, but a combination of life events has made it so I haven’t returned “home” in three years, and I really miss it.

Even though the French are really snotty and horribly annoying and they’re always on strike and you can’t good WiFi (which they pronounce “Wee Fee” like it’s some kind of kid’s toy) to save your life…I love it there and I always will.

P.S. Forgive my “ph” schtick. It got a little out of control today. But it’s all in the name of a good cause! This evening I’m presenting my work to be accepted at a local art gallery in Virginia. I’m hoping that I can take advantage of the Christmas and assorted other December holidays crowds to raise some real money for the Parkinson Foundation of the National Capital Area (PFNCA), on whose board I proudly serve. You can purchase the images above (and many others) at my Etsy shop.

My Pictures * My Parkinson's * My Pitbull (mix)

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