Showing posts with label michael j fox. Show all posts
Showing posts with label michael j fox. Show all posts

Saturday, January 7, 2012

Boys of Summer Book - Entry #135

Walnut Creek, CA
I am very worried about Dan. The stress of me (and my indecisiveness) is really wearing him down. I know we need help. But I don’t want to be a burden to Bob and Annamaria, either. I’m worried about what they’re giving up to be here with us. I love having them for selfish reasons, but I feel guilty, too. 
September 26, 2005
Dear Robert,
I am moved by your extraordinary adventure, The Boys of Summer and by your dynamic work to help find a cure for PD. The Michael J. Fox Foundation for Parkinson’s Research expresses our support for the film that you created with love and wish you well in your ongoing efforts. Your documentary touches lives and your message raises awareness, understanding, funding, and hope. Your story will go well beyond results that can be measured. It mobilizes desire into action, making progress possible. 
We at the Michael J. Fox Foundation share your hope; private fundraisers like yours are extremely helpful in moving forward our mission: to help scientists find a cure for Parkinson’s Disease through an aggressively funded research agenda. Since our inception four years ago, the Michael J. Fox Foundation has maintained an uncompromising pace, inspiring and advancing research. We strategically target our resources to achieve maximum scientific impact. We recently awarded several new programs addressing genetics, biomarkers and cell replacement therapies. Our initiatives attract and support established world-class scientists as well as researchers new to the field of Parkinson’s.
Funding significant research initiatives is only possible with the help of people like you. As you know, scientists believe that a cure for parkinson’s is within reach in our lifetime. We will not stop until a cure for Parkinson’s is found. For the six million people living with Parkinson’s, there is no time to wait. 
Thank you for sharing your special story and for helping to raise money and awareness for the fight against Parkinson’s Disease (PD). As you organize your event and seek sponsorship and support, please know that I would be happy to talk with any of your sponsors about the research we fund or any aspect of the Foundation’s mission, should they desire more information.
All the Best,
Amanda McDorman
Special Gifts Officer

Friday, January 6, 2012

Boys of Summer Book - Entry #134


September 22, 2005 - Bob
Los Angeles, CA

We have been receiving phenomenal support. There have been some wonderful additions to the project. The Michael J Fox Foundation is now officially on board alongside the National Parkinson Foundation -- getting them to coexist is really something (see below). Though they represent the same illness, they have different approaches as to how to spend the money they receive. In a nutshell, Michael J Fox Foundation is 100% research-based in search of a cure. The National Parkinson Foundation divides it’s money in to research as well as care for those who now live with the disease. There is no right or wrong here and I greatly appreciate both groups willingness to stand by one another with this film.

Great, great, great stuff.

So...our thought is to continue on the marketing front for now -- seeking out individuals who will champion the cause. Hopefully a nice stack of letters will go a long way to helping us be seen where we need to be seen.

I was speaking to my dad a few weeks ago and he sounded very small and distant, as he gets when he is sad, angry or frustrated. They had just begun a massive kitchen remodeling project and right as it began, my mom went into a deep depression, meaning she is not available to manage the project she set up. My dad really hoped to do nothing more than sign the checks. Stress is particularly damaging to him now with Parkinson’s. This is one of the areas where the cognitive effects of his disease come into play. He can’t process things the way he’s used to and he’s aware of it. Then he gets frustrated by that and the vicious cycle continues to spin.

I drove up to see my parents and check things out firsthand. It was as if the house I grew up in was suddenly under a dark veil. The kitchen being torn out is a dramatic thing no matter what mental/spiritual state any house and its inhabitants are in. But because my mom and, therefore, my dad, were both in such a weakened state, the entire house felt as if it were nearly lifeless.

Mom had been down for several weeks already and it was really stressing my dad out. What I mean by mom being “down” is that she literally doesn’t get out of bed but for 15-30 minutes a day. She’ll get up, get a little something to eat, often say something about an upset stomach and that she needs to “go lie down for a moment” then be gone again for several hours. To be clear: she’s not making this illness up. She really does vomit and goes through all the physical pain she’s describing. So far as I can tell, there’s nothing anyone can do for her. My dad, on the other hand, is dealing on a daily basis and trying to avoid a depressed state himself. He could use the support. He really needs my mom, but she’s checked out.

After much soul searching, I knew I couldn’t be a whole lot of help from a distance. I asked my dad if he wanted me to move up to help out. My dad, as I’ve said before is a very proud man and has a very difficult time asking for anything. He said “yes” without hesitation.

It was a relief and quite scary at the same time.

The next big call was to Annamaria. How was she going to take this? She was just getting into a relatively new job she’d been working as a massage therapist. She was making good money and finally enjoying Los Angeles (no small feat for her). When I asked her what she thought, she didn’t hesitate either: “Let’s move up there”. I’d loved her for nearly three years at that point -- but never had I loved her more than when she answered so selflessly and supportively.

This is a big change and very sudden, but one I am very honored to have the ability to make.

Sunday, December 11, 2011

Boys of Summer Book - Entry #113


Sept. 25, 2004
Michael J. Fox Foundation Headquarters
Manhattan, NY
INTERVIEW: Debbie Brooks
CEO of Michael J. Fox Foundation
RC: What is the goal here at the Michael J Fox Foundation?
DB: What we’re really trying to do is get a focussed effort on the research. So in a sense we have created an infrastructure to sift through all the research that’s going on and then prioritize it and get the money to those researchers. We’ve essentially created an opportunity for other folks to tag along. Because that’s hard work -- it’s expensive work to get that done well, to convene scientists and synthesize the information. Then to take action steps and raise money out there so that scientists can respond to the call, and then to monitor that and take anything that seems promising to the next level -- this is hard and important work. So, to the extent we can create that framework, then our goal is to invite anyone else that’s interested in the study to come along.
And our particular interest is to make sure that we get money to the most promising, high-impact projects as quickly as possible all around the world. 
DB:
Today, most people know what Parkinson’s Disease is. They may not have an accurate sense of it in that, they may think of it as just a shaking disease because a resting tremor is one of the cardinal and early features, but of course, Parkinson’s is a disease of lack of movement. So it’s almost ironic when you think of a Parkinson’s patient as shaking when in fact one of the things they can be really challenged with is they can be frozen and not be able to move at all.
RC:
Michael is obviously a “heart” place for people to go because they know him. But, I would guess, another way you may approach people is by telling them that a cure for Parkinson’s is, quite likely, a cure for a number of other illnesses.
DB:
Sure, scientiest are pretty clear about that. as complex as Parkinson’s is, it’s still the neurological disorder that we know the most about. It has the best models for scientists to work in, so this is a distinct advantage. Given that, the path toward making progress is probably clearer and as we learn things in Parkinson’s they can be readily applied to the areas of neruodegeneration that we don’t know as much about. It is what we call a “wedge disease”. Making progress in Parkinson’s can probably help in other areas. 
RC:
And what other areas are those?
DB:
Brian disorders. Alzheimers research for one, but some things we learn could be applicable in non-brain related areas such as spinal cord injury or juvenile diabetes -- and vice versa. It depends on what angle you’re looking at. I was even talking to people who work in epilepsy and there’s good work going on there. 
DB:
The good news for Parkinson’s patients is that there are many interesting paths. And one of the things we do here is we take a portfolio approach. Across the many, many grants that we’re funding are mini-strategies that hit along parts of pathways -- there is more than one pathway on how to get there so we have investments across all of these and I’d say one of the things that’s been tough is the past couple of years there have been two different areas where there was a lot of promise and then we’ve had some sobering news. But this is one of the places where the Fox Foundation shows leadership: when you come across some data that looks discouraging not to let the scientific community just walk away and be frustrated. But, in fact, to try to provide some leadership to keep everybody focussed on: “What did we learn about what went wrong here? What steps do we take forward regardless and how do we retreat just briefly and quickly to position ourselves to keep moving forward?” We’re interested in really not blindly following one path but looking across as many paths as we can that could lead us to answers. 
DB:
You know, one of the real privileges of doing this work is that you’re serving. When I think about the part of my job that is the job, it’s getting in here and doing the best work we can and making the most impact and being clever about how to do that and working hard at that. It’s rare that it doesn’t get eclipsed by the notion and the reminder of how important the work is. It’s not just good work, it’s important work; it’s not just hard work, it’s meaningful work. When people get to know us, it’s not long after they realize how dedicated we are and how much energy we’re putting into really trying to make a difference. So we’re often thanked and it’s one of those, “No, no thank you” -- “No, thank you!” because it really feels that way and I think it is one of the joys of being able to do this kind of work is to have that in mind. 
RC:
In your experience, do people, generally speaking, want to give?
DB:
I think everyone would like to be connected and figure out the best way that they can do something meaningful. 
DB:
As complex as Parkinson’s is, it’s still the neurological disorder that we know the most about.   It has the best models for scientists to work in. So this is a distinct advantage and, given that, the path toward making progress is probably clearer. And as we learn things in Parkinson’s they can be readily applied to the areas in neuro-degeneration that we don’t know as much about. 
DB:
Not just giving, but giving with impact. It’s a crucial and really fulfililng thing that all people can do. And by the way, giving with impact should be how everyone thinks about the way they give their gifts, no matter what size they are. Because, as a donor myself, I would hope that every donor wants to make sure that when they’re giving money they know that it’s being well cared for and that it’s going right to the mission and that it’s being efficiiently used. That leaves the bar high for folks like us but we don’t mind. 
DB:
I started liking baseball when I was a kid. I was a scorer for the boys baseball team when I was in junior high because I had a crush on the third baseman. So, maybe my initial motivation wasn’t as pure as it really could have been, but long after he was a distant memory I was out there going to baseball games and having fun.
RC:
Did you play?
DB:
I played in a few leagues. I lived in Chicago for a couple of years and there’s a huge league of young adults who get out there and play mixed-singles kind of thing. It was fun. 
RC:
What is your favorite baseball movie?
DB:
Still pretty partial to “Field of Dreams”. But I like...it’s hard to go wrong with “Bull Durham” or “A League of Their Own” or...even “Major League” with Charlie Sheen. I think they’re all fun. I even liked “The Bad News Bears” and “Angels in the Outfield” -- loved that one. That’s a pretty good setting for me to be just teed up and ready to watch a movie if it includes baseball. 
RC:
What is the greatest ballpark?
DB:
I still think I’m kind of partial to Fenway.
RC:
What makes Fenway special to you?
DB:
It’s a good spirit and it’s easy to get to when you live in Boston you can just hop on the subway. It was fun. 
RC:
I know you get thousands upon thousands of requests. What made you want to respond to ours?
DB:
It sounded like an exciting trip. I really admired you and your father going out on the road. I, personally, am a baseball fan and it just sounded like a constructive, positive and energetic message that you’d be out there carrying and it’s exciting. 
RC:
So tell me your favorite baseball memory -- or memories.
DB:
Well I’ve probably been to 19 ball parks, so I’m no slouch on the ball park tour. Of course, it’s been a while since I’ve been out on the road so a lot of the ball parks I’ve gone to are moth balls now. My first trip was to Candlestick Park with my grandfather when I was a little girl and I distinctly remember being taught, “Take me out to the ballgame” all the way to the game so that I’d be prepared for the 7th inning stretch. Some of my personal highlights would be -- I went to a few World Series games with the Phillies, ‘82 or ‘83? Somewhere around there. I saw Steve Carlton break a strikeout record. I saw Nolan Ryan throw his 5000th strikeout in person. I also saw him throw his 300th win up in Milwaukee, so I’ve actually -- I went to the last game at old Comiskey Park and the first game at new Comiskey Park (U.S. Cellular) so I have a little fun in my baseball world background. 

Thursday, December 8, 2011

Boys of Summer Book - Entry #111


September 17, 2004 - Bob
Las Vegas, NV

Whew...

And with a day and a clear mind, what a difference. I'm actually hopeful that I'll make this crazy deadline yet. I've been slamming together tape as fast as I can. I'm going to make the halfway point tonight, then we’ll fly up to the Bay Area for Poppa's 90th birthday party. Part of me says it's crazy to be going (as I have SOOOOO much to do), but at the same time, it will allow me some sanity downtime -- always a good thing.

I have an interview with Howard Frank Mosher (author of “Waiting for Teddy Williams”, among other novels) set up for when we go to the Northeast next week along with Debi Brooks, CEO of the Michael J Fox foundation -- excellent stuff. I'm still hoping to get a couple minutes of Stephen King's time, should he make his way over to the festival. Fingers are crossed -- along with my eyes from staring at the screen too long. 

Seattle 6, Oakland 3
 WP: R. Villone (6-5)   LP: C. Bradford (5-6)

September 20, 2004 - Bob
Las Vegas, NV

Editing, editing...

I'm past the half-way point and currently consolidating files (giving me a moment to say hello to all of you -- "hello!"). I am nervous about the amount of work in front of me -- it's still a lot and sleep just may not be much in the cards for the next couple of days since a cut of some variety is due on Friday and I'm leaving for NY on Thursday. But...that is what it is. I want this shot and I feel it's important for the film to give it this shot, so I'm putting it out there.

I love watching this story unfold. I love the time I got to spend with my dad. I feel so honored and blessed. I love the reaction I get from people when I tell them about the journey -- I know we did something very special and I look forward to sharing it.

No game for Oakland today.

 

Tuesday, December 6, 2011

Boys of Summer Book - Entry #109


September 1, 2004 - Bob
Las Vegas, NV

I've begun to look at footage and it is a mixed bag for me. Some things make me happy, some sad. It's always this way in post. There are the memories of the things done well, the opportunities missed, the great times in between, the "didn't we shoot that?" (which, of course, we didn't) and many more. Sometimes I get so wrapped up in my shoots that I see something in my eye and assume it’s on tape or film somewhere. When someone develops that system send me an e-mail (please mark it urgent).

The difference for me here is to remember my “gold” is in the story. We'll have plenty of footage from B-Roll sources (the city's convention centers have been great, sending shots to help us setup our introductions to each place we go).

I have an interview set up for today with an indie film magazine -- I'm very excited about that. Today is the 1st of Sept. -- whoo. I better get back to editing this bad boy to make Sundance’s September 24th deadline (crazy).
Chicago White Sox 5, Oakland 4
WP: S. Takatsu (6-3)   LP: J. Duchscherer (5-5)

September 6, 2004 - Bob
Las Vegas, NV

Almost through the tapes now. There is about 50 hours of footage, all told. Today (hopefully) I will begin dropping the footage into the hard drive. That'll give me just under two weeks to edit a rough cut. It's insane, I know, but I have this feeling...it could be insanity I'm feeling. Hmmm...you may be right, I may be...

At any rate, I'm going forward with this for now. It will be what it will be.

The B-Roll from other cities is fitting in quite nicely, accenting what I've already got (fly overs and helicopter shots were difficult to come by during the trip, ya dig?).

Also, I have an interview with the Michael J. Fox foundation set up for the New York trip we’ll be making at the end of this month. The two Stephen King short films I did, “Luckey Quarter” and “Roland Meets Brown” are going to be part of the first-ever Dollar Baby Film Festival in Orono, Maine at King’s alma mater. I'm still working on interviews with both Stephen and Ken Burns. We'll see...
Boston 8, Oakland 3
WP: B. Arroyo (8-9)   LP: B. Zito (10-10)

Tonight’s loss (above score) burned my ass like almost no other this season. The Sox rivalry is heated from our side for sure because we’re getting our heads kicked in by the Beantowners. Tonight, though, after the stupid ump (Brian Knight, I believe?) missed the fact that Manny Ramirez CLEARLY trapped a crucial hit by Mark Kotsay and instead called him out, the flood gates opened wide.

Now, I know enough to know that a good team gets past plays like that and certainly finds a way to win games like that. Right now, though, I’m not sure if the A’s are a good team. I love these boys and they’re breaking my heart...right on cue.
 

Tuesday, November 15, 2011

Boys of Summer Book - Entry #92

Young Onset Parkinsoian 
at the YOPN, Minneapolis 2004

Pam Milton
RC:
Women are less-known to have Parkinson’s. Do you have any numbers or percentages on that?
PM:
I don’t know the percentage but you’re right. There are a lot more men than women. 
RC:
Do people act surprised when you tell them you have Parkinson’s?
PM:
Oh yeah. Very. I’ve had it for 19 years. 
RC:
And how did you come about knowing you had it?
PM:
When I was pregnant with my first son, I was 22, my right hand started shaking. I went to the neurologist and he said, I don’t know what’s wrong with you. And it took me 15 years to get a diagnosis. It wasn’t until Michael J Fox came out and said he had it. And some people said, y’all are exactly the same age, maybe you have it, too. And they tried me on sinemet and it worked. So I found out in 1999. 
RC:
And what was that feeling when you got the diagnosis?
PM:
I was elated at first because I thought, “I know what’s wrong with me”. I’m not crazy. It’s not all in my head. It’s not just nerves. But then it sunk in. What got me was that it’s not just physical. The cognitive stuff is what gets me. 
RC:
What have you experienced on the cognitive front?
PM:
The short-term memory loss. Inability to...numbers don’t work any more. Checkbook? Forget about it. Don’t do it. Not being able to find words. Not being able to remember -- oh, I was sitting at my laptop the other day and I couldn’t remember where the phone cord went. I was looking over the whole thing and it just wasn’t there. I had to have someone show me. Just stuff like that. 
RC:
So is that frustrating?
PM:
Yeah, it’s frustrating. Sometimes it makes me feel old. I don’t want to feel old. I’m only 42. I’m not ready to feel old yet. 
RC:
You said we were living your dream. What do you mean?
PM:
I’ve wanted to go to Yankee Stadium. I’ve wanted to go to Wrigley Field. I’ve wanted to go all over, just visiting different baseball fields. My dad thought I was going to be a boy, so I’ve been watching the Atlanta Braves since I was five years old -- or younger. And they finally got good. They’re finally worth watching which is fantastic. My oldest son played in high school. He played since he was four. And now he doesn’t play any more and I’m like, “I want baseball!” He was a pitcher and he was good. He had a curveball that could make a batter look stupid. 
RC:
You’re a proud mama.
PM:
Oh, just a little bit. We used to laugh -- he’d get up on the mound and I’d hide behind the pole because I couldn’t watch him. I’d hide and then I’d look and then I’d get out there and start yelling. He’d look over at me and go, “Shut up, mom!”
(She laughs)
I’ve always told my husband that I want to rent an RV, drive around the country and just go to all the baseball fields. 
RC:
Do you think you might do that?
PM:
I don’t know. I don’t know. Maybe one day. It would be awesome. But when I heard what y’all are doing I thought, “God! They’re living my dream! I want to do that so bad!”
RC:
What’s great about baseball?
PM:
The fans. The fans are fantastic. The Atlanta fans are great. I’ve watched different events happen for players -- milestones where the fans were so curteous and so appreciative of what they’re watching. I was listening to the radio when Hank Aaron hit 715. It was awesome. It was so cool. I was listening the year before, the last game when he didn’t hit it. You know? It was almost there and he just didn’t quite get it. 
It’s...it’s America. I love football. I love college football. Pro football -- eh. But baseball -- baseball is great. My grandmother’s 87 years old. She never misses a Braves game. I mean, we had a family reunion last weekend. She went downstairs. Forgot about everybody, went downstairs and watched the Braves. It’s just great. 
RC:
You said baseball is American. What does that mean?
PM:
Aw, come on. Okay, I’ve got some  friends here from England. And they’re going to the Twins game on Sunday. And we were talking about it and they said, “We don’t even know what it’s about. We don’t have baseball.”
RC:
Do you think the history of the game is important?
PM:
Oh yeah. I used to work in insurance and we had a customer that would come in and he was really, really old. And everybody would say, he’s older than the first day of baseball. It’s always been there. 
My dad used to sell sporting gear. He has a Hank Aaron jersey that Hank Aaron signed. It was going to be mine, until I had two brothers. I have a feeling they’ll get it.