Sunday, November 13, 2011

Boys of Summer Book - Entry #91

Director of Development 
at the YOPN, Minneapolis 2004

MS:
I’ve been raising money for organizations for about twenty years -- Universities, Opera companies and then made a complete switch to the National Parkinson Foundation. There is someone in my family who has Parkinson’s Disease. Most of us who work there have some connection to the disease. Generally someone in our family has it, has had it. So we understand the disease in that way. 
RC:
Why have you been in the fundraising sector?
MS:
Ever since I was a little girl, I have always been a little fundraiser -- and a little talker and a little loudmouth. I think, because of my mother, who is outgoing and wanted me to look at ways I could help people by raising the necessary funds to help people do what  they need to do. I remember, as a little girl, selling magazines and probably selling more magazines than everybody put together. It taught me to relate to people. And, though I’m a therapist by trade and my schooling is in counselling/Psychology, which also comes in handy raising money, my work has been mostly in philanthropy
RC:
What is that personal satisfaction you get from helping others?
MS:
I think it’s something bigger than me. It allows me to feel that I’ve been a part of something significant, particularly as it relates to this disease. We are hoping that we find a cure -- I mean that’s our ultimate goal, to put ourselves out of a job. I hope that a cure is found and there’s no reason to have a National Parkinson Foundation. Until we find that cure, we want to raise as much money, as much awareness as possible to move toward that cure. And that takes a lot, as you know. 
RC:
Why are there different Parkinson agencies?
MS:
Well that’s a very interesting question. Actually someone asked me that question earlier today. We were visiting the Struthers/Parkinson center here in Minneapolis and it’s one of the finest Parkinson’s centers in the country. It’s a model program and, it’s interesting, someone there asked that very same question. 
I think that what we want to say is that we are unified. So, Michael J Fox Foundation and American Parkinson Disease Foundation and Parkinson Disease Foundation and National Parkinson Foundation and Parkinson Action Network and Parkinson Alliance -- we’re all closely tied together, but we each have a different focus, perhaps. In some ways, it’s confusing to people -- shouldn’t there only be one?
Well, we support the Michael J Fox Foundation but their work is really related to research only. Our work is related to research but also to care for those who have Parkinson Disease and their caregivers. Because, while we’re working to find that cure we better be helping those that have the disease and their caregivers as they cope with the disease. I know it is complicated that there seem to be so many out there working. But we do talk to one another and we do care about one another and we support one another. 
RC:
When you heard about my proposal (for this trip) what was your initial reaction?
MS:
What you were proposing was very intriguing to us. I’m glad that we listened. And you seemed like a very sincere person. We get lots of calls. Every day we get calls from people that want to do this or to do that who are raising money and raising awareness, they want funding from us...and we’re glad we get those calls. But your call was a little different because I knew it was something from your heart and your soul and related to your father, Dan, whom we have come to know well. I think there was something that kind of touched me from the moment we spoke on the phone and I knew we needed to somehow collaborate. 
RC:
As you watched this develop in our pre-filming stages, what was the process like at NPF? Because we had some back and forth...
MS:
Yes and I remember that at one point you were frustrated. And I could see why you were frustrtated because we wanted to do everything ethically, properly and you wanted to do everything ethically, properly certainly as it relates to the way people are making gifts and you are doing tailgate parties. We wanted people to make charitable gift contributions and understand what is a charitable gift contribution and what wasn’t. And you and I did go back and forth on that to say, here’s what it is and here’s what it is not. And then I think we had an understanding and the foundation saw the merit, the importance, the value in what we were doing to back it in the best way we could. 
RC:
And you guys obviously showed that faith to me it made the project possible. Tell me a little more about this PSA we’re talking about. 
MS:
We have been wanting to do Public Service Announcements for quite some time. One of the things I was most concerned about was that we are a national organization and the PSA’s we have are outdated. We have some that Dick Clark did for us, Christine Lahti, Holly Robinson-Peete -- wonderful people certainly connected to the disease in ways that are very personal to them but they are outdated. Dick Clark never ages, but we need to sort of look at a new face to us as we change our logo, our website -- we need to develop a piece that corresponds with that. When we started talking about that, we talked to a writer in Portland, Oregon about doing a script, he immediately and I immediately thought about “Boys of Summer”. You, your father what everyone is doing, we felt that “Boys of Summer” would be representative of the story we want to tell. It’s a dream to have Sir Sean Connery be a voice over, be in it or come be a part of the PSA if we can get him. We have a Parkinsonian who lives in Scotland and he is talking with Sir Sean. And we’re hoping he will be very...what’s the word? Persuasive. And, to our knowledge, the connection that Sir Sean Connery has to the disease is to his friend who is a patient of Dr. Abraham Lieberman’s, who is our medical director. So you were one of our first choices to think about for a PSA. 
RC:
Do you remember the letter you wrote to your staff about us?
MS:
Yes. We asked your father to tell us a little bit more about himself and, I have to tell you, as I have put it, it is one of the most poignant letters -- I may even get a little choked up about this -- that I have ever read from a Parkinsonian. The words and how he talked about himself and the disease and the diagnosis of the disease. And one of the lines that he talked about in the letter he wrote to me was that his neurologist has shared with him that (PD) is really about dopamine. And it’s about the amount of dopamine that Parkinsonians don’t have that others have. The way he put it was that dopamine was like flour in a canister. And you go until the canister is empty. And that was heart-wrenching to me when you think about the canister of flour being full or empty. So when I wrote back to him I said I hope the canister is always full. And, of course, when we met in Phoenix and I had each Parkinsonian sign the t-shirt, he wrote, “the canister still has some flour in it”. It was -- very touching. So what I shared with my colleagues was his letter and I said, this is why we do what we do. And I do believe that. 
RC:
What are your expectations/hopes for the “Boys of Summer” film?
MS:
Number one, I know you all have been on the road and you have sacrificed. You’ve been without showers, been without hotel rooms, you’ve camped, you’ve done it on the cheap, you’ve done it so that you can have the film and make the film because that’s the product. Yes, you’ve had wonderful and, I’m sure, incredible times along the way -- but you have sacrificed, I know that. Not everyone would jump into a Ford Explorer and traipse to 30 Major League Ballparks in the United States and Canada. It takes energy. And with your father, I’m sure it’s taken a toll in some ways, in ways that you’re now seeing right before your eyes. 
(For the film) we have high hopes. You’re a salesman and charismatic, as well, so we think that you and your father will help pitch and sell and promote this piece for whatever it comes to be, for whatever comes along the way, for all the people who still have some flour left in the canister. And we hope that your hopes come true which is that it debuts at Sundance or wherever it is you might want it to be. To my knowledge there has never really been a documentary done about Parkinson Disease. I think that it would be really something to have more people know more about this disease and to see real people doing real things related to sport, baseball in this case which means so much to you and your father. We hope it does what Ken Burns films do...that it hit a different level of consciousness. 

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