Benefit For Cal Robbins

Interview with J. Robbins of Jawbox

by: Brett Mathews

AMPMAGAZINE.COM is far from finished. We are expecting an ‘official launch’ next week or so, but this is something that we could not wait for.

Last week, our friends over at No Idea Records launched an Ebay auction for a friend, and trailblazer of our underground community, J. Robbins, of JAWBOX, BURNING AIRLINES, GOVERNMENT ISSUE, CHANNELS, and producer and engineer as such essential bands as JAWBREAKER, AGAINST ME!, CLUTCH, JETS TO BRAZIL, and many more. Var and Jennifer over at No Idea are two people who have been inspiring me for over a decade now, and this was no exception!

Below are a couple interviews we did this weekend. The first is with J. Robbins, father of one our bravest family members, Callum Robbins, with subsequent interviews with Var (No Idea Records), Zach Barocas (ex-Jawbox / Cultural Society) and Gordon Withers (cello player who released Jawbox On Cello: A Benefit for Cal Robbins).

If you would like more information on Cal’s daily life, SMA in general, or to see what you can do to help, there are links either below take you to J.’s blog page, one of several SMA info web sites, the No Idea auction page, or even just a link to a PayPal site that is set up. Please do what you can. It’s what this community is based upon.

For more information about Callum, please visit:
www.callumrobbins.blogspot.com
www.desotorecords.com/cal

For more information about SMA, please visit:
Spinal Muscular Atrophy Foundation: www.smafoundation.org
Families of Spinal Muscular Atrophy: www.fsma.org

Auctions To Benefit Cal: EBay

On a side note, AMP Magazine will be acting as a hub for some of our friends in the industry to be able to help with this cause, and others that we are faced with in our extended family. Much like this web-site, this is something we have been working on for several months now, but this just needs to be implemented sooner than later. I sent out a letter to some of our friends the other day telling them that I would love their help in raising money for Cal’s situation.  The response has been amazing, and we will be launching our own Ebay auction in the next few days. THIS IS NOT AN AMP THING! We are merely a hub for our friends support. We will be launching our auction site with test pressings from NOFX, THE LOVED ONES, THE DWARVES, THE EXPLODING HEARTS, a gold record from HAWTHORNE HEIGHTS, REAL BIG FISH stage clothes, symbols from Zildjian signed by VELVET REVOLVER, art from friends like Horsebites, and so much more. This is directly from them, their own actions, and their concern for this situation. We are merely a hub for this. Please know that, and thank them directly for their help, if you feel so moved.

As I said in my letter I sent out to labels and bands, I am a little older. I grew up at Gilman Street. I remember, and believe, that a community acting together can do a lot of good. I have seen it happen, and been a part of it too many times to not. I am excited to see how much good we can do with this in the upcoming years. Things like No Idea’s Cal Robbins auction, and what I have seen our friends at Sub City / Hopeless Records do, along with countless other actions and reactions in the underground have been just beyond inspiring.

I wish that we had had the capacity, and ability to do this for my friend Lance Hahn. I am excited to jump in and see how much good we can do for our littlest friend, Cal right now. There could be a cure for this a year from now. I want to make sure Cal is around to see it. Please read the amazing inspiring interviews below, and please, click on the links. Find out about SMA, find out about Cal and his fight, and please check in on the auction that No Idea has going on. Thank you to everybody involved. Thank you to Kim, Bill and Nick over at DeSoto Records for being such a strong hub for this effort. And thank you to J. and Janet. To be more inspiring to the underground through your fight and actions outside of the bands that you have both been a part of is a statement unto itself.

Brett, and all at AMP Magazine

An interview with our friend and amazing father, J. Robbins-

How is Cal? How are you and Janet doing?

We are all pretty good. We just got back from a family trip to a small town in Mississippi for a special physical therapy course (www.futuresunlimited.com) that’s been really good for Callum, and those trips are also always really good intense family time. He is really growing, his vocabulary and imagination and intellect are totally blowing up. He is a hilariously funny little guy. Really shy with people he doesn’t know though (he is 2 years old after all). He is also doing pretty well health-wise - though a statement like that always comes with a lengthy explanation attached ... I think we’re all doing as well as we can imagine given the circumstances.

Happy belated Birthday to Cal. I know 2 is a special age for you to see him hit. Would you care to explain?

Something like 90% of kids with Cal’s diagnosis (SMA Type 1, also known as Werdning-Hoffman Disease) don’t live to the age of 2; many of those who do make it are already dealing at that age with things like feeding tubes and heavily assisted breathing, have little or no lung power or voice ... I have to knock on wood when I say this, but Callum has a powerful voice and is eating, digesting, and breathing all under his own steam. He’s strong.

How has SMA affected your little one?

Callum can’t walk, stand, crawl, or even sit unsupported, and according to all the current knowledge on SMA, he will not ever be able to do any of these things. He has OK head control when he is seated correctly, but he can’t lift his arms from the shoulder, and he has almost no grip in his hands or “push” in his arms. He can feed himself finger foods if they are lightweight enough and his arms are properly supported. His speech and the muscles in his face seem to be unaffected, so he is very expressive, but he is largely immobile otherwise - except when he’s in water, where gravity has much less effect and he can actually move his arms, legs, and torso around quite a bit more.

Would you care to give a brief (or elaborate if you wish!) description of SMA, what it entails, and what is happening in the world of SMA research?

SMA is a genetic disease that severely impairs the brain’s ability to communicate with the major voluntary muscle groups. It’s the result of a recessive genetic mutation - if both parents carry the mutation then their child has a 1 in 4 chance of developing SMA. 1 in 6,000 people carry the mutation. It’s hardly ever tested for in pregnancy because SMA is so rare and the test for it is very expensive - genetic counselors usually only test for it if there is a known history in either family. This is a pitch for anyone reading this who may be about to have kids to please find out more about SMA testing and your possible risk of being a carrier of this mutation. This is one disease that could eventually be wiped out if people are informed.
SMA can develop at several stages in the child’s life. Onset in infancy is Type 1 (Cals’ condition) and that is the most severe. Onset later in childhood is Type 2, typically slightly less severe; Type 3 shows up in adolescence, and there is a much more rare adult-onset version as well. SMA is a degenerative condition, like ALS or Parkinson’s disease. There is no way to predict the progress of the condition; the worst losses typically happen early, and then the following decline can happen relatively quickly, very very slowly or in some cases hardly at all - if a kid with Cal’s diagnosis makes it past certain milestones (like turning 2), there is a greater chance as time goes along that the disease will behave more like a stable birth defect (like severe muscular dystrophy) instead of a degenerative disease that continues to take function away. Some people with SMA die before age 2, some live well into adulthood. There are even middle-aged adults out there who had Cal’s exact diagnosis.

The biggest killer of kids with SMA is pneumonia, which can and often does develop out of any kind of cold or infection - the child doesn’t have the strength to cough stuff up and the infection just hangs around until it becomes pneumonia and the child is overcome. Cal has already been through this cycle once, after his 1st Christmas, but he came through a week in the hospital and recovered without losing any additional ground (it makes getting him together with other kids into even more of a challenge, because we basically have to just keep him away from anyone who might be sick. Fortunately our friends with kids know and understand this).
Stem cell research seems to be the big hope for SMA treatment or a potential cure right now. In fact there is a bill going around in congress now called the SMA Treatment Acceleration Act, which if it’s passed will free up a lot more government money for SMA research. There is a lot of belief in the scientific community that a cure may be possible soon, because they have traced the cause of this disease to a single gene. But “soon” in the world of research is not the same as “soon” in the life of one kid. We’re talking about years.

You were talking to me yesterday about a special sling that you had made for Cal. Do you care to talk about that, and what you and your son were doing with it? I loved hearing it.

This was actually a gift from a friend whose daughter had SMA. It’s just a frame with a couple of slings that hang down, so he can lay on his side, we can put his arm through the sling so it’s up off the surface, and with his arm supported like that, we can roll a ball back and forth on the table and play “catch.” He is well into it.

So, a lot of people in the underground are really rising up and helping one of our own. I know you well enough to know that in your heart there are no words to describe what that means to you. I would like to think that something like this would happen in any self governed small community, but I think it’s really inspiring to see people like Var & Jennifer at No Idea put auctions together, people like Gordon Withers put out a whole cello CD of JAWBOX songs, bands step up and play benefit shows, etc. That’s an underground that you have spent a lot of time building, and being a part of. That has to feel great to know how big your extended family is.

I can’t sum it up. I can’t even begin. But the support we’ve had from friends - and from people we never even met - has been immeasurably uplifting for our family. This is an incredibly expensive condition to deal with so of course there is a practical side where benefits and donations have been an enormous help, but there is also (for lack of a better word) a spiritual side, an energetic side, where knowing that people are sending good energy this way, wishing the best for Callum, whatever .. we can feel it and it is an unbelievable help from day to day. I can’t imagine it’s not part of the reason he is doing as well as he is.

So, what does the immediate future hold for you?

We are going to the zoo on Friday with a group from the Baltimore County Infants and Toddlers program (which provides some great services for kids with disabilities). Otherwise, we are just settling back into our home routine after 2 weeks away. We are hoping to go back to Futures Unlimited in late June or July.
Fight SMA is also having their annual conference in DC April 23 & 24, we’re going to that for the first time this year.

Are you doing much recording and mixing ?

Yeah in fact I am working a lot. There’s been no time whatsoever for my own music, but I have a studio here in Baltimore about 25 minutes from the house, and making recordings is my full-time job. Though as any freelancer knows, it is cyclical, feast or famine type thing. I do mornings with Callum from 7AM to noon, so I like to think I get more quality time with him than if I was working some hypothetical 9 to 5 job and only got home in time to put him to bed. Janet is home with him full-time and I am the “breadwinner” (as much as that word applies to someone who does what I do). And of course when we go to Mississippi I just don’t work for 2 weeks, which is a little scary ... but so far so good.

If you could send our readers to three websites right now, what would they be?
www.fightsma.org
www.curesma.org
www.SMAfoundation.org

Any last words, my friend?

Just many thanks.

To read more about people involved in the Cal Robbins effort click below.

Interview with Var From No Idea Records
Interview with Zach of Jawbox
Interiew with Gordon Withers

Comments