Often Awesome The Series is a web series about Tim and Kaylans battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Click here for the entire series archive, new videos will be posted on the Indestructible blog and ALS Film Fund website.

Here are the first and most recent videos from Blake and Andy, the talented and generous filmmakers.  ALS Film Fund is proud to become their 501c3 fiscal sponsor, which will enable the project to receive tax-deductible donations and apply for grant funding.  Please donate any amount you can to help, your support is greatly appreciated.

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.

Yesterday, as I wrote an 800-word rant on the state of things for this blog, some strange glitch happened on wordpress and I lost it all.  Lesson learned to always start out in a word document instead of directly online.  Basically it was an explanation for why we have been so quiet lately —- times are tough, we have no money, waiting for our 501c3 status to come through so we can find the money to do all these things we want to do, etc.  But instead, I lost it all and actually, I think that was for the best.

When I stop and think about all the things I could complain about, I also stop and think about my brother.  I ask myself whether or not he would care, agree, or sympathize.  A big part of the reason I am burned out right now is because I feel like I am letting Ben down.  I am disappointed that we haven’t been able to do more with the movie.  There still hasn’t been a huge TV premiere.  Netflix STILL does not have Indestructible on their site (and I don’t know why!).  We simply just do not have the resources or manpower to do much more than we are doing.  But at the same time, I have my health and so many things to look forward to.  Ben wasn’t able to say that for the last 6 years of his life and I never forget that.

Even though I get frustrated with how many obstacles we face, I am also able to stop and think about the other side of the story.  We regularly get requests for free copies from ALS patients, so clearly they are finding out about the movie.  We sell a few DVDs per week and that helps a little with our funding problems.  There are screenings every now and then reaching out to larger groups of people.   Indestructible Art was a huge success, just one of many programs we are working on. We now have the AFF Board of Directors, a great way to utilize other people and not have to pay them.   A dedicated ALS Film Fund website is currently being built for free, a wonderful example of people who are truly kind and generous.  There is more but you get the idea.

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Part of my blog post from yesterday had a compilation of the number of clinical studies from the NIH, past and present, on ALS and other diseases.  I wrote how pathetic the disparity is based on numerous factors, which may or may not seem obvious. You can make your own conclusions, but keep in mind that ALS and MS have about the same rate of incidence, just one factor of many.  The number of studies per disease:  ALS – 130; MS – 472; Huntingtons – 581; Alzheimers – 692; Parkinsons – 614; AIDS – 4213.

I ranted about this yesterday but am glad I can’t post it now.  Right after I lost my blog, I received 8 different news reports about how the FDA has finally given Neuralstem the OK to test stem cells in ALS patients.  This is progress in a long and arduous battle.  While it doesn’t make up for the fact that there is still a lot that needs to change – awareness must happen and people need to care – this is at least one small step in the right direction.  I like to think that perhaps Ben and his movie has had something to do with it.  Perhaps someone at the FDA saw Indestructible and thought, ‘what if I were in his shoes?’ and that helped sway them to make this decision and allow for clinical trials.

We may not have any money, and we may move slower than I would prefer, but at least we are doing something.  What Ben created is a gift, a golden nugget if you will.  Even if I start to focus time on other endeavors unrelated to ALS, or spend more time as a mom and with my family, I will always be committed to bringing this film and our work to the public.  I believe in this gift, what it has done for me and for countless others is huge.  I will never give up until a cure is found.  Ben didn’t give up, he worked his skinny little butt off until the day he died.  So while things might be quiet right now, who knows what else is around the corner that we have had a part in.  Perhaps the person who finds the cure for ALS will have been inspired to do so because they saw Ben’s movie.  That is enough for me.

I saw the movie “Up” the other day with my two children, Henry is 2 ½ and Elliot is 1 ½. Summers are quite hot in North Carolina and watching a movie in an air-conditioned theater in the middle of the day is the best alternative to the local pool. My kids were both riveted. Elliot sat on my lap and couldn’t take his eyes off the screen. Every once in a while he realized that there was popcorn and would divert for a second to grab a handful and shove it in his mouth. Henry too was riveted, but he is more sensitive and cried in a few places that were a little scary for a toddler. I, however, cried like a fool, but not because the dogs were chasing the bird. There were certain elements to the story that speak on so many levels, often as children’s movies can do. But “Up” captures the story of life in so many wonderful ways. It is almost embarrassing to the art of filmmaking that it succeeds, considering it is a kid’s movie. It is about doing what you want to do and what you love….but also finding the love in everything that you do.

I had my dog Rita put to sleep two weeks ago. It was not really a difficult decision in hindsight. She was old, in pain, and had some health problems. She was not so far gone that she could no nothing, but we decided that it was not in anyone’s interest to wait until that point. I miss her, and I loved her dearly, but her life had come to a close. I think if I could ask her, she would say she was ready to go. At one point, while the vet was injecting her with sedative, she looked up at me as if to say ”finally, thank you!” I wonder how many people would take this option if it were legal and accepted in society.

There are times when I wonder how Ben was able to do it as long as he did. I watched with agony as I thought about myself in his situation. I see how it is an impossible decision. I don’t judge one way or the other, and I don’t even know how I would feel. But Rita went when she did, and Ben went when he did. Rita at my hand and Ben at fate’s hand. Were they the right times? Who knows, but they were the time. I am sure I will be judged for not letting Rita die when she was naturally going to go. However if I was not feeding her, nature would tell her to go off in the woods and take care of it.

June 22 is the day for Indestructible Art. Ben’s memorial service at the cemetery is the day before. There are many emotions to describe, all valid and important. The event on Monday takes up so much of my time and energy, but Ben’s memorial will pull much more from me. I am relieved for Ben that he doesn’t have to fight anymore, but I miss him terribly. I am relieved for Rita that she lived a long life, but I miss her terribly. There is a constant tug of war with what feels good or right and I am sure I will never have that answer. But in the meantime, I will probably go to see “Up” again, because it is a wonderful way to share an important piece of life with my children.

Here is an excerpt from “Killers: An Odyssey Into the World of Murder” by renowned writer Phil Carlo, one of America’s foremost experts on serial killers, sexual predators and the Mafia.  Phil was kind enough to share this with ALS Film Fund.

Phil Carlo

…All my professional career, I had hands on experiences with criminals — serial killers, child molesters, Mafia hitmen, even the head of a Mafia family.  In fact, I was coming back from Trenton State Prison after interviewing Richard “The Ice Man” Kuklinski late one Saturday afternoon when I noticed my left foot was kind of dragging — not as sprite as it normally was.  I ignored it, thinking I was overtaxing myself, my foot, for I was running seven miles every day in Central Park.  I was in the prime of life, fit and filled with vim and vigor.  Well, that slight limp I had that Saturday afternoon turned out to be a lot more than a strained muscle.  After going to see numerous doctors, I was ultimately diagnosed with ALS, better known as Lou Gehrig’s Disease.  Thus, I entered a world I had known nothing about.  As I was first told about the realities of the disease, how devastating it was, I was shocked and stunned — I thought about suicide.  But I was born and raised in Bensonhurst, Brooklyn, and guys from my neighborhood did not commit suicide.  There were enough people trying to kill you, let alone you trying to kill yourself.  What I had first been experiencing in my left foot was atrophy and the atrophy moved up my body to my hands, my right leg, my arms, and ultimately my diaphragm  Now, some four and a half years later, I cannot stand up, I cannot walk, I can’t brush my teeth, feed myself, and on and on.  If it wasn’t for my wife, Laura, I’d be lying in bed vegging.  My condition has gotten so bad that if someone lit the bed on fire, I couldn’t get out of it without help.

But what I’ve learned, what I’m doing, is not letting the disease control my life.  Every day when I wake up the first thing that I think about is my work.  I am a professional writer and I am on my third book since I was diagnosed with ALS.  For the most part, I don’t think about the disease.  I concern myself with my work, keeping busy, never asking, “Why me?  Why me?  Why me?”  To any of my friends out there who have ALS, were recently diagnosed with ALS, get up every day.  Get dressed, get washed.  Shave, shower.  Get outside.  Read a book.  Watch educational television.  Stay engaged.  Please do not get depressed.  If you have an up attitude, you’ll keep yourself stronger longer.  I am presently writing a book about my disease and the killers with whom I have worked over the past thirty years.  I will be posting segments of it here, on Rebeccah’s site.  Now, we are very hopeful, thanks to the new administration and the fact that the donkey George Bush is no longer in power, that stem cell research will step in and become a bright light in a dark place — light at the end of the tunnel.  ALS…fuck ALS.

Phil Carlo

I am tired of waiting.  There are all these things happening right now, big things, and it’s frustrating to feel like so many of them are in other people’s control and I am not sure who they are.

Iplex….I can’t stand thinking about it anymore.  All these patients who are waiting to get this drug that might possibly help them.  They have to wait for the FDA, wait for the Review Boards, then wait and see if it does anything.  All this time, they are waiting to see if they get worse and how quickly.

Funding….this one drives me absolutely mad.  If people had any idea how much time, work and money goes into this operation, they would be stunned.  And the fact that we will probably never make any of it back, that’s the tough part.  I work my ass off for the simple fact that I know it helps people.  Ben did too.  How we have managed this long is a mystery and I am not sure how long I can wait for things to get better.

TV….we finally have distribution and they are doing a great job.  But now we have to wait for these various leads to come through.  Don’t they know how important this is?  Don’t the people sitting in their large corner offices understand how many people are waiting for this?  So many people have heard of Lou Gehrig’s Disease, they might even recognize it as “ALS” but they have no idea what it is, what it is about, and that it will probably affect their lives in some way soon.  And what about all those who are so alone out there, wondering if anyone knows what their life looks like, waiting to see if anyone cares and does anything.  Of course people care, but it’s hard to realise that when you are the person living it.

Mass hysteria…..I feel like we are about to see an epidemic.  Is it true that things have to get really really bad before they can get better?  If you look at our economy, that might be an accurate statement.  I am not sure I want to see that happen with ALS, but I feel like it is.  I feel like this thing has to get so out of control for people to react and do something.  As far as I can tell, it is getting out of control and it scares me.

Hope….It’s just not fair that people have to wait for hope.  But from where I sit, it seems like it would be pretty tough to have much if you have ALS.  I am continually amazed by the happy people with this disease.  All I can assume is that they have hope.  Ben did, he always left the door open for it.  It was a skill he had.  I see the same skill in a lot of ALS patients and they are all inspirational.

I guess I need to just shut up and wait, continue doing what I am doing and hope that it will all work out ok.  Things can always be worse I guess, and I have seen many things change in the past few years.  It doesn’t seem like enough, but at least it’s something.  If there is one thing I have learned in this life, it’s that I am forever grateful for all that I have and all that I will have tomorrow.  Because tomorrow could look very different.

I am really trying to grasp onto the whole Iplex debate.  It makes no sense and it is affecting lives in an incredibly negative way.  Here it is in a nutshell.

Ben took a drug for about 2 months called Iplex and had some interesting results.  He felt his muscles move in ways he hadn’t for a long time.  He tried many different therapies or treatments, basically anything our dad shoved at him, and he was fairly aware of his body’s reaction to something.

Shortly after he started taking it, the pharmaceutical company that owned the patent took Iplex off the market and it was caught up in litigation for several months due to a patent lawsuit.  Ben was given a different drug called Increlex.  While it may not be inferior for Short Growth Stature, what both drugs were developed for, it did not work the same as Iplex and Ben could feel the difference.  Here is the story that Ben wrote in the midst of it all.

The Fastest Sailboat in the World

Come July 3, 2008, over a year from when he took Iplex, and Ben died after complications to the diaphragm pacemaker surgery that he had undergone 3 days earlier.   No one can say if Ben would have survived had he been able to continue taking Iplex but he should have had the opportunity to find out.

Now March 2009, almost 2 years to the day that Ben premiered the film at Cinequest where he won the Jury award for Best Feature Documentary.  When he heard the presenter describing the award, he said later that he thought there was another movie about ALS at the festival that he missed.  Two years have gone by and ALS patients still do not have access to Iplex.

In November, my parents helped organize a march on Washington to protest and raise awareness for ALS and Iplex.  Two days before the march, the pharmaceutical company finally decided that public health was more important than their pocketbook and Genentech released Iplex to be used for ALS patients.  So finally, after countless letters, emails and phone calls, ALS patients will be able to try a drug that is apparently safe and non-invasive.  If their insurance companies will not pay for it and they can’t afford it, other companies or individuals will.  Win-win situation, patients can see if it works and maybe someone will have found a cure or effective treatment for this horrific disease.

But wait.  The FDA needs to approve this specifically for each patient.  Patients must fill out an IND (Investigational New Drug) form.  My mom tells me how she is putting together these packages for patients to send to the FDA.  It takes her an hour for each one, and she is pretty efficient with her system now, much easier for her than for many patients.  So ok, not that big a deal.  The FDA has to cover their asses because the drug was not developed for ALS and they are worried about lawsuits of course.

So then we think things are really turning around and patients can try the drug, which by the way, is safe for infants with short stature,  so one would assume it is safe for adults who have ALS.  But no, that would be too easy.  The FDA has rejected the IND’s for two reasons which are not only false and invalid, but seem to be the makings of a conspiracy.  Why is the FDA standing in the way of these patients?  I understand that there needs to be a system and people can’t just take whatever drugs they want.  But if they have a physician write a prescription, there is no apparent downside, and they are willing to take the risks, why shouldn’t they?  They have been given a death sentence, what do they have to lose?

There are other factors at hand here as well.  There are many doctors who are not only avoiding the Iplex issue, but some are actually interfering with their patients right to be proactive about their care.  My theories are many, but a few come to mind:  insecurity, the inability to have a patient know more than them; Money - are they being paid by someone with an evil plot to rule the world?  Is it an episode of Heroes? Perhaps it just simply has to do with power and greed.  Are they control freaks who can’t handle it if they aren’t the ones to find the cure for ALS.  Whatever the answer, it is sick and twisted and it is affecting people’s lives all over the world.

Have doctors given up?  Do they just think that ALS can never be cured and there is no point in trying?  Someone has to be the first and it can be your brother, your friend, your mother, it can be anyone and we are all susceptible.

There has been a recent update to the Iplex issue, one that came up before I even got a chance to post this blog entry.  According to Reuters, the FDA will allow the patients who submitted their IND’s before March 6 to be able to take Iplex.  Apparently there is a limited supply…..read the article here. I guess nothing comes without a price.