ALS FILM FUND NEWSLETTER – WINTER 2010

The most important thing I learned from my brother Ben, and the crappy disease he died from is this -

Life is short.  Make it count.

That message permeates almost everything I do and believe.  And when it doesn’t, I can generally kick myself in the ass and get it going again.

For me, life is about laughter, being creative and endlessly exploring the world around me.  Everyone has different details in the script, but the basic premise is the same.  We all want to have an impact on something, and die proud of who we were.

Success can be measured by many things.  Luckily, it is not always about money, but also by what kind of influence you have.  Indestructible has been, and will continue to be, a wonderful and important tool to educate people about a worldwide killer, about a man who faced his fears head on, and most importantly – appreciating life to its fullest.

I thank Ben and this piece of my journey, for giving me a gift that impacts every part of my future.

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It is what it is.

There are all kinds of ways to make a difference in the world, we all have some to contribute, so take a moment and think about one thing you can do per month that will make a difference.  For example:

·    Instead of going out for this next week, go to a fundraiser in your area that will not only be a fun evening out but your dollars will help an important cause!

·    Skip two lattes next month and text HAITI to 90999 to send a $10 donation, even if you already have!  It’s a small amount to many of us, but makes a huge difference.

·    Instead of cleaning your house one week, volunteer 3 hours of your time, services or expertise to one of many local organizations.  My plan is to find a caregiver who needs a break for a few hours.

·    Take a pass on facebook one day and spend your lunch hour reading about something new.  I just read Night by Tony Judt and as much as I already know about ALS, his story is beautifully written and thoughtfully expressed, detailing an experience I had not yet known.

·    Participate in a walk, run or bike for charity!

·    Donate a percentage of your business sales to a charity or non-profit organization!

·    Have a garage sale and donate the proceeds to an organization of your choice.  ALS Film Fund is always a good one!  Sorry, shameless plea.

·    Take the time to mow or shovel for your neighbor, especially if they cannot do it themselves.

·    Collect canned food in your pantry and donate it to your local food bank.

·    Use the internet to find an organization that you believe in and ask them what you can do to help.

Obviously, I have a definite interest in ALS, how patients are treated, when a cure will be found, and how to curb the rate of incidence.  Ben and his movie have a bigger message though. It’s not just about ALS, neurology, or even disability.  It’s also about life and the choices we make.  How to look adversity in the face and still come out smiling.
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I received an email from someone who just watched Indestructible, and I want to share with you her thoughts on why this film is so meaningful and important.  Please note, for privacy I have changed the names.

“I just finished it and it was … absolutely soul-searchingly beautiful.  The sincerity … the rawness … the unconditional love that your family showed Ben and Ben showed the world.  I’m actually crying as I’m writing this to you.  that affected me very very deeply … it makes me want to love better … love more … be a better person.  Anyway … Brian didn’t have the strength to watch it … he’s fighting off depression here and there and now’s just not the right time but he will.

Brian has still not been diagnosed with anything although he’s lost more motor control in both hands and the twitching in his body has moved into his feet and up into his neck.  He is losing muscle mass because he’s too tired to do anything at all.  One of his doctor’s told him to put on more weight and eat protein.  Another doctor told him to be a vegan.  No one really knows anything…. to tell you the truth, he doesn’t want to believe that has has ALS so right now he’s believing anything and everything else it could be……

I think I’m going to watch that movie a few times … your brother’s smile is so healing.  so very healing.”

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ALS Film Fund is committed to the awareness and education about ALS, through creative and accessible means:

·    We will always find a way to cover the postage to send DVDs to ALS patients, email us if you are an ALS patient and would like a copy.

·    As soon as we think Congress will actually watch the movie, and we can justify the postage, we will use the film as an educational tool for those who make the decisions within our government.

·    If you want to coordinate and organize a screening in your area, we will work with you to make that happen.

·    We have recently been made aware of a group of people in Greensboro, NC that are creating short web videos about a man’s diagnosis and journey with ALS.  I urge you to watch these videos, pass the link around, and learn more about this devastating disease.  Often Awesome The Series

·    We recently contacted almost 600 medical schools, home health care workers and ALS clinics, asking them to utilize Indestructible as an excellent tool when educating about Neurology, Palliative Care, ALS, and terminal disease.  If you know someone who works in education, health care or neurology, please ask them to purchase this film, recommended by The American Medical Association for insight into the patient experience.

·   Please continue telling people to add Indestructible to their Netflix Queue, so we can hopefully find distribution there soon.

In short, we will do what we can with what we have.  I will continue to send newsletters when I have something to say.  In the meantime, think about what you can do, once a month, and just see what happens.