It's never too late to donate. And if you hesitate, think of this guy!

Hi.

The Valencia Great Strides walk for the Cystic Fibrosis Foundation is 10 days away. We're inching toward our fundraising goal, but we still need help.

I know what you're thinking, because heck, I've thought it myself at times. "I don't have a lot of money to give, so how can it possibly help."

My friends, every bit helps.

I will use Bernie Sanders as an example.  Not his politics, because this is definitely not about that, but the success of his campaign. Regardless of what you think of Mr. Sanders, he has raised A LOT of money through small donations. People with limited means believe in his cause and give what they can.

THAT is what I'm talking about. Most of the money that the Cystic Fibrosis Foundations takes in goes directly into research. So... every bit counts, no matter what the amount.

This year, Julie's school held two bake sales, selling cookies and Rice Krispie treats. They sold for a buck each. She doesn't work at a large school and most of the buyers were children. So we're talking a buck or two here and there for a week.

Those two bake sales raise close to $1000.

Every bit counts.

If after reading this you're still hesitant, then look at this kid's face. That smile. The joy. The innocence. The great future ahead of him. Help him.  Help Jacob and kids like him who suffer from cystic fibrosis. You can make a difference.  You DO make a difference. Every bit counts.

Thank you!

Now here's the link: page: http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=2602145&pg=personal&fr_id=5010

Great Strides update 2015

The final amount that Team Jacob raised this year was over $10,000. A stunning achievement. Furthermore, Sophie and Jacob were both in the top five for teens/kids raising money for the walk.

The Valencia walk raised over $70,000. That's staggering. Valencia is not a large city, yet our community continues to pull in some big bucks to kick CF's ass.

If you're reading this, thank you for your support and prayers. If you donated, don't worry, chill, cheetah, your thank you note is coming. I made a promise and I will stick to it.

I never realize how stressful the walk is until a week or two after it's done. I feel a weight off of my chest. I've become so accustomed to suppressing my fears and sadness over CF. Yeah, that ain't a good thing.

Thanks again.

Aloha

Super Heroes and a Real Super HERO

Jacob and I went to see the latest Avengers movie yesterday. He thought it was awesome and had a hard time deciding which he liked better than last summer's Guardians of the Galaxy. Before our screening, there were no less than three super hero movie trailers! This wave of comic book movies has no end in sight.

Watching the film, though, I couldn't help but think that Iron Man, Captain America and Hawkeye don't hold a candle to the guy who was sitting next to me. While the stories of extraordinary humans with mighty powers are fun and a great way to escape, the real hero in my life is Jacob. What he lives through on a daily basis is more than any kid should have to endure. I wager to say that Bruce Banner wouldn't complain so much about his anger issues if he was living with cystic fibrosis.

CF is a pain in his tookus. Besides the obvious traits of the illness, here's some of the stuff he has to put up with. He misses school because his chest hurts or he's coughing too much or his stomach is really bothering him. He has to wake up aat 5:30 AM just to fit in his breathing treatments, take a shower (which helps open the lungs, as well as make his hair look good) and squeeze in a couple bowls of cereal. At night, when he's exhausted because his body is working overtime to keep him healthy and he made it through the school day, he does extensive homework and has a snack before it's time for his nightly breathers and then it's off to bed.

By now, this has become a routine for him, for all of us, and while there are the occasional moan and groans, for the most part he weathers it all really well. I question if I could have handled something like this when I was 13. Doubtful.

This kid, throughout it all, is the funniest, most interesting and loving young man I know. I wish I could say that he learned this all from me or Julie, but I believe that it's just Jacob's nature to be a really great kid. He is an example we all should follow when it comes to handling the curveballs that life throws at you, or in his case smacks you upside the head with the moment you're born. I only wish I could do more for him when it comes to raising money for CF. The best I can do is write.

And so I write because it's what I was born to do, and because I can use words to appeal to you. Please, consider helping us find a cure to this monster called cystic fibrosis. Help us prolong the lives of men and women and children.

One of my favorite scenes in a super hero movie is in Spider-Man 2 (the Tobey Maguire one). There's a brilliant sequence when Spidey has to stop a runaway train with every ounce of strength. He manages to save everyone on board, but collapses. The passengers lift him over their heads and carry Spidey back into a passenger car, where he can rest. When he comes to, even though these strangers have all see him unmasked, they tell Spidey that not worry. They have his back and they'll never reveal what he looks like.

This is our chance to help out my hero and show him that we have his back. We can all lift him up by donating to end cystic fibrosis so that he may someday rest without worry.

Jacob's Donation Page

Aloha

This year's fundraising poster

I give you the latest and greatest featuring Lego Jake.  What do you think?

I have been a jackass; don't hold it against my son

I know. I've been terrible at sending "thank you" responses to all of you awesome people who have donated to Great Strides in the past couple of years. Please... please, please, please... don't let that affect whether you'll make a donation to Great Strides this year. Want to be pissed at me, that's cool. I deserve it. I've been a jackass and let a general malaise hover over me like a storm cloud that refuses to rain. But this isn't about me. It's about Jacob and the thousands of other children and adults living with cystic fibrosis.

What can I do to make it up to you? Want a short story? I'll write you one. A short film? May take a little time, but consider it done. A copy of King's Highway? Send me your address and it's in the mail. A copy of Basement Songs? Okay.

I love my son more than any words on a blog can get across. I do not have thousands of dollars to donate to the Cystic Fibrosis Foundation to continue their groundbreaking research on treatments for the disease and progress toward a cure. So I must turn to you, my friends.

I apologize. And I beg you, please consider donating. When we say every little bit helps, I'm not just feeding you a line. If 250 people donate just $20, Jacob reaches his goal of $5,000. That's nothing.

That's all I have for today. Thanks for your time.

Here's the link: http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=2247535&pg=personal&fr_id=3288

Aloha

Great Strides 2015... with an AWESOME video

Jacob has pneumonia again. He has a cough that causes him to double over, shaking his entire body. He's had trouble sleeping through the night thanks to the cough. Well, thanks to CF. A simple cold can quickly turn into something else with CF kids, as it did in this case. But Jake is a champ. Although he's in a lot of pain, he still manages to  crack jokes and make us laugh.

I bring this up as a segue into the following announcement: The Cystic Fibrosis Foundation's Great Strides walk for Valencia, CA (which is where I live) will be on May 9, 2015. This post is the beginning of my fundraising for Great Strides.

Here are some facts that you probably know, but I'm going to repeat them:

Cystic fibrosis is a life-threatening illness that effects the lungs and digestive systems of people born with it. In people with CF, the body produces a thick, sticky mucus that clogs the lungs and obstructs the pancreas.

Because of the mucus in the lungs, bacteria likes to grow and wreak havoc. CF patients often develop lung infections that can be life-threatening. The mucus blocking the pancreas prevents natural enzymes from helping break down food and absorbing nutrients. To date, this has been Jacob's biggest obstacle. But we know families whose children who have to be admitted to the hospital at least once a year.

Every since Jacob was diagnosed with cystic fibrosis at ten weeks old we have participated in Great Strides. In those 13 years, our family has raised over $100,000. This is a figure that I'm very proud of, but until there is a cure for CF we will continue doing whatever we can to raise money and awareness for this horrible illness.

Since 2008, we've been making fundraising videos to help support our fundraising efforts. This year, Jake had a really fun idea that required a little more work on his part and help from his friend, Sam.  I think it turned out pretty cool, and I know that Jacob was very excited about it \.

Please watch the video. Even though he gets a little "animated," I think you'll see that Jake is one great kid. If you listen closely, you can hear his favorite song by One Republic playing in the background.

This year I'm directing people to Jacob's personal fundraising page. I hope you'll go check it out and consider helping us find a cure for cystic fibrosis. Here's the link:

Jacob's Great Strides Fundraising Page

As always, I am humbled by the generosity of my family, friends and the strangers who are kind enough to make a contribution.

Aloha

Great Strides 2014 was a HUGE success!

Before I get into any more news about Legendary and when it will begin posting, I MUST give an update about this year's Great Strides.

Team Jacob raised over $9,000, and the Valencia Great Strides walk has raise $112,000 to date!

That's frickin' amazing. Our small community raised a butt load of money!!

The walk day was hot and wonderful. This year we were in a new location at the mall, one that was a little removed from the "in your face" presence we've had in years past, but the flip side was that the traffic was a little safer.

The turnout for the walk was exceptional, and our team had close to 50 walkers. I owe all of you personal "thank yous," and they will be forthcoming. For now, I'm sending out a HUGE, universal "thanks" to all of our family and friends. It's your love and support that has kept our family afloat and filled with optimism. I wish I could hug each and every one of you. Alas, that would be costly and some of you might not like getting a big embrace from a sobbing father.

Tell you what, next year you're all invited to the Walk and we'll have a blow out in our backyard.

Not sure where we'll fit everyone...

Who cares!!

Seriously, though, thank you one and all. Your generosity instills hope in the lives of so many people you do not know. God bless you.

Aloha

Great Strides 2014 is Tomorrow!!

The radio silence on my end is typical around this time of the year. Besides the other stuff going on in my life - work, podcasts, family - fundraising and stressing out about cystic fibrosis tends to consume everything.

This year we started out slow in raising money for Great Strides, the annual Cystic Fibrosis Foundation fundraiser to find a cure, but things really kicked into gear these last two weeks. Our team set a goal for $5K, and we surpassed that by over $2,000. Among the ways that we had people contribute (beside the usual soliciting of money through emails and posts) were a fund rasier at Jacob's school, a bake sale at the school where Julie works, Sophie's own efforts, and a bucket I placed on a table at my office. All of these proved to be successful ways to raise money. It was very, very thrilling.

One of the coolest things that happened was the contributions by Brave New World, the comic store in Santa Clarita where Jacob buys his comic books. Portlyn, the owner, donated a basket for the walk raffle, and she posted a wonderful note on her weekly email blast to all of her customers. It was amazing for me to read, but for Jake it was one of the coolest things ever. In the comics world, I feel like he has found kindred spirits and a way to escape being the boy with CF. The folks at Brave New World have embraced Jacob and his cause and made him feel like one of their family.

I can't believe that it's been 12 years that we've been doing Great Strides. I can barely recall the first one. I know I was emotional, as I will be tomorrow. No doubt I will have to escape to a bedroom at some point tomorrow night during our annual dinner with all of the walkers and weep over the outpouring of love our family has been show. I've been in a funk all week; the tears have been on the edge for a couple of days.

To all of you reading this, thank you for giving your love, support and money to find a cure. We are optimistic about what is in store for CF people in the next 10 years. Your money has helped in the development of new therapies that will someday put an end to this damn illness.

Thank you, thank you, thank you.

Kid Duplicate asks you to Be a Hero!

Kid Duplicate was designed by Jacob. He asked me to draw it for him. I just helped him achieve his vision as an artist. Before I started, Jacob chose the pose I should use and gave me diagrams of Kid Duplicate's accessories. Jacob colored it.

Please help Jacob and Kid Duplicate beat CF!

Donate today!

http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067

Great Strides is around the corner.

May 3 is the Valencia Great Strides and there's still plenty of time to donate. Please check out our team page, watch Sophie's wonderful video, and consider making a contribution to ending cystic fibrosis.

http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067

Aloha!

Great Strides success

Last week was stressful, as the build up to Great Strides always is for me. The pressure of trying to make that fundraising goal, along with the preparations and the anticipation of friends and family coming together to find a cure for cystic fibrosis can become overwhelming.

There were numerous times when I felt the spark to write. Each time this spark occurred something would come up. This is one week when I don't beat myself up over not being diligent about writing. This is one week when the only thing that matters is Great Strides.

The walk was a great success. Our Valencia Great Strides had over 400 people in attendance and together we raised over $67,000 for the Cystic Fibrosis Foundation. Team Jacob raised close to $7000 and our family surpassed our goal of $5000! The walk day is always emotional for the families. You are quickly reminded at how large your support group is and how many people care about your family and your child.

I always appreciate that my parents drive in from Tucson to join the team; they do this each year in support of Jacob and the family. This year was also special because Julie's parents joined us, having flown in from Ohio Saturday morning. The weather was nice, although a little hot towards the end. I'm always concerned about Jacob during the walk because I know that the reminders of the seriousness of his illness make him sad. They make me sad, too.

Great Strides is never a truly sad day for me. It's emotional, yes, and there were many moments when I was resisting tears (my friends Giles and Wardlaw will have a field day when they read this). But it's really a day of celebration, a day to recognize the CF community and all of the wonderful work being done to find a cure, and a day to make us appreciate that we aren't alone.

I know many CF kids and adults they can feel very alone, as they aren't supposed to have any human contact with each other. This is particularly true for Jacob. He doesn't think we understand how much it sucks to be a boy with CF. Someday he may develop a friendship with a CF person through Skype or video chat. I'm sure this would help him realize that he is not alone.

Of course, with Great Strides we realize that we're never alone. I feel blessed each year when the donations and letters of encouragement pour in.

I know I have to send personal "thank yous" to everyone who donated, but I hpe that you all realize how important you are to our family, and to me.

Thank you!

PS- If you still want to donate, there's still time:
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8337&idUser=165835

The squeaky cough

Jacob has been sick all week fighting a nasty cold. He missed several days of school, but went on Friday when he seemed to turn a corner. Waiting around that corner seems to have been a wall. Yesterday and today he has had a squeaky cough that keeps him hacking all day long and into the night. Not sure how he's getting any sleep. Right now I can hear him coughing away. He complains that his chest hurts and I can only imagine how it must feel. When I get sick with a cold I actually get nauseous from the pain in my chest when there's nothing left to spit up, yet my body keeps fighting and making me cough.

"Everybody gets a cold," Julie reminded me the other day, but I still worry. Hearing him like this makes me feel useless, the worst feeling any parent can have.  I just want to wrap him up and squeeze the germs out of him. I wish I had super powers to do that. Jake would really get a kick out of that.

Last year Jacob seemed to be fighting the same damn cold for half the year, He never could shake some virus he got in the summer.  Around Christmas, after a heavy dose of antibiotics, he finally seemed to kick that SOB. I pray that this isn't the start of another long battle. Of course his body has been battling since the day his way born. He has been strong and his lungs have remained healthy. Damn it, if I could just... do something other than watch Justice League Unlimited with him to make him feel better.

I'll use my frustration to seque into my ple for donations. GREAT STRIDES is two weeks away. If any of you reading this can make a donation to the CF Foundation we would greatly appreciate it. As I say all of the time, there is no right amount. Every little bit helps!

We are about halfway to our goal. Please click on this link and consider helping.

If you are stopping here for the first time, you may be wondering why I'm writing about Cystic Fibrosis when this is a website dedicated to my Basement Songs book. If you read the book, you will discover that CF plays an important part in the story I tell. Thank you for coming to the website.

Aloha

And... I'm back!

One of the downfalls of my writing nature is that the moment I get caught up in a project something else gets neglected. I began writing two new scripts in the past month and the blog took the hit. Sorry! However, I left with a strong post for people to mull over. Great Strides is less than a months away and I hope those of you reading this book blog will take the time to consider donating.

Exactly what have I been up to? Glad you asked.

First of all, on the book front, I've entered Basement Songs into a couple of indie book contests. Not sure how it will do, but I hope that those who read it might pass it along to a friend. I also continue to query about reviews for music magazines and blogs.

Elsewhere, I've started the work on a new series for Popdose. It doesn't have anything to do with basements, but there is music involved. When it gets closer to the premiere I'll let everyone know.

The scripts I'm working on have nothing to do with each other. One is a teen driven sports drama, the other is a horror noir pilot based on a comic book I co-wrote three years ago.

Oh, and I just came up with my next book idea!

We were visiting my parents this weekend and my dad pulled out a box of old family photos that date back to the early 1900s. Hearing Dad talk about the family history and his own youth in the 40s and 50s conjured up a whole bunch of ideas and themes that I've been dying to write about. For now I have to do a lot of research, but I'm excited to write something that draws on the Malchus family past.

As I said, we visited my folks in Tucson over the holiday and I heard the new Patty Griffin song from her upcoming album. It's pretty special.

Follow the link to hear it: https://soundcloud.com/newwestrecords/patty-griffin-ohio

That's all for today. Happy April! Go Indians (who won their season opener today) and please give to CF!

Aloha

Great Strides 2013

Each year around this time, our family comes together to begin raising money for the Cystic Fibrosis Foundation’s Great Strides Walk. This is the annual 5K walk that serves as our big fundraiser to help find a cure for cystic fibrosis (CF). Our family has lived with disease for 11 years, ever since that December afternoon when my son Jacob was diagnosed with CF. When I say “family,” I don’t just mean my wife, Julie, our daughter, Sophie, and Jacob. I mean my parents, siblings and their respective families, Julie parents, siblings and their families, plus the hundreds of aunts and uncles, cousins, 2^nd cousins, best friends and distant acquaintances from years past who have all given what they can to help us in our battle. These people, all of them, are family in some way. How else can you describe these people who have shown so much love and support for Jacob and our family?

With every new Great Strides campaign comes the task of writing a new letter asking people for money. Some years it is a great burden, as the weight of this illness can bear down on the psyche. Other years the letters seems to flow easily from my fingers because I’m inspired or because I am desperate, I’m never really sure. What I am sure of is that each and every year we have done a Great Strides campaign we marvel at the generosity of those people we call family.

It’s that time again in which I must reach out to all of you, my close friends, my Facebook pals, my work colleagues and or course, my blood relatives. I must reach out to you because, although there have been great strides made in discovering new treatments that may halt to progress of CF, these type of medicines do not effect all people with CF… not yet. But they are close, so very, very close. Someday within Jacob’s near future, a medicine could be available that will allow him to never have to do another breathing treatment to break up the sticky- life threatening mucus that forms in his lungs, that will allow his body to grow and be stronger, that will allow him to throw away the vest and the medicines that he hates so much (but must do to stay healthy) and that he’ll live a long and full life just like anyone else.

But it takes donations from people like you, and from the people you may forward this letter on to.

Each year at this time I put my heart on display for all to see. I have no pride as I plead for help to raise money for Great Strides. Any parent in my situation would do the same. I hope that you’ll consider following this link to the Malchus family CF Donation page and helping my son, Jacob, and all people living with CF. Someday that medicine will become available. Someday can’t come soon enough.

This year, Sophie has taken the initiative in creating her own CF page, in writing letters to her friends, and by working on our family fundraising video. I hope you will watch this video and feel the love that she poured into putting it together. My daughter adores her younger brother, as the pictures in this video show. And, like her parents, she will do anything to ensure that her brother lives a long and healthy life.

To donate: Malchus Family Great Strides fundraising page

Thank you for your time and your continued support of our family and the Cystic Fibrosis Foundation.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Great Strides is coming

In the next day or two, I will begin my fundraising campaign for this year's Great Strides Walk in Valencia. We tried to come up with a new song for the Malchus family video, but each one chosen was either inappropriate, or Jacob nixed because he didn't want to "ruin" the song by having it become associated with CF.

As Sophie will attest, these songs become reminders of what we're fighting for when we ask for donations. Because of past videos, Sophie can no longer listen to "Here Comes the Sun" or Springsteen's "Workin' On a Dream" because they make her heart hurt too much. For that same reason, we didn't use the perfectly suitable Bruno Mars song, "Count On Me." Jacob loves that track, thanks in part to its use in the animated film, A Turtle's Tale (a movie that his dad just happened to work on), and also because it's just a wonderful song.

So, we chose to tweak last year's video (with the One Republic song intact) because it turned out so wonderful.  However, thanks to the hard work of Sophie the video was updated with some great pics from our once in a lifetime trip to Disney World and Give Kids the World.

Tomorrow I will post the video, along with my official fundraising letter. For now, enjoy the Bruno Mars song that got rejected, probably the only time that's ever happened to the immensely talented Mr. Mars. Here he is performing on Julie and Sophie's favorite talk show.

Aloha