MA House Docket 2060

Well, that certainly doesn’t sound like a band name.  Neither does “An Act promoting continuity of care for multiple sclerosis treatment,” but that’s what I’ll be talking about here.  In Massachusetts, State Representative Sean Garballey (D-23rd Middlesex County) reintroduced this bill today in the State’s House of Representatives.  It needs a co-sponor or twelve.

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So, what’s in this bill?  Well, first of all, this was originally introduced prior to the outcome of the Presidential election (remember how I used the word “reintroduced”).  This bill fills in some serious coverage gaps with regards to MS disease modifying therapies (DMTs).  If you have MS (or know someone who does), then you’re probably aware that these therapies are not cheap, even with insurance. There’s a long, long list of reasons for that, but for the sake of sanity, it’s sufficient to simply point out that a majority of MS DMTs are biologics and need to be created/grown in a lab, and that takes time, training and a good deal of money.  They’re not drugs in the “generic Tylenol” kind of way.

We know that health insurance companies don’t like the word “expensive.” You’ve likely heard horror stories of cancer patients being dropped by their insurance carriers for being just that.  Some other things insurers can do is limit your treatment options, and there are some that are trying to do just that in MA. This can mean that if an MS patient gets a new job with new insurance, they could be forced to change their MS treatment, based solely on the formulary of their new insurance plan.  This is dangerous and ultimately, far more costly in the long run. In more technical terms:

“This legislation will ensure that insurance coverage for MS disease-modifying treatments is not interrupted due to non-medical insurance policy/formulary decisions.  This bill also provides that the continued coverage for the MS treatment (outside the formulary) shall not be subject to any greater deductible, coinsurance, copayments, or out-of-pocket limits than any other disease-modifying prescription drug for multiple sclerosis provided by the insurer.” –Jake Krilovich, National MS Society

Simply put, it’s a state law that would bar insurance companies from forcing MS patients to use DMTs that don’t work for them. It also bars insurance companies from essentially discriminating against an MS patient by slapping them with higher payments for their disease modifying therapy.

Want to help make sure this is passed, especially seeing as the ACA’s pre-existing conditions laws are being dismantled? Here’s what you can do.

If you live in Massachusetts

  1. Find out who your state (NOT federal) Senator and Representatives are.  If you’re not sure who they are, check out www.wheredoivotema.com.
  2. Drop them a line- call or email and ask them to support HD 2060, “An Act promoting continuity of care for multiple sclerosis treatment.” If you happen to have a personal experience with MS, go ahead and tell them.
  3. Drop Sean Garballey a line and thank him for introducing the bill.
  4. Do it again in a week or so if you haven’t heard back.

If you don’t live in Massachusetts

  1. Drop Sean Garballey a line and thank him for introducing the bill.
  2. If you think his bill would be something your state should introduce, call your state reps and see about getting them to draft a similar bill to Sean’s.
  3. Email MA reps for friends and family members who reside in MA. You’re not a resident, but you’re related to one, and they may listen to you as a result.

What happens for this year in terms of shows is up in the air, but at the very least, this is one thing we can do to make the world a slightly less dark.

A little too quiet..

It’s been fairly quiet here at Crash Safely this year, if you haven’t noticed.  So what gives?

A few things, actually.  There are really only two people behind the scenes at CS, and we’ve been doing it for five straight years.  I’ve pretty much given up my birthday for that long, so the selfish part of me would like it back (thank you very much).

Maybe not quite like this.

Maybe not quite like this.

The other thing is that I have been editing videos for the Boston Symphony Orchestra’s Casual Fridays series, and the first one happens to fall on a night I would usually book for Crash Safely. I essentially double booked myself, six months in advance.

 

By the way, you should totally go to Casual Fridays- ticket prices are reduced, there’s free food before and after, and you can mingle with orchestra members. If you sit in the “tablet” seating, you can see my work.  (You can subscribe to Casual Fridays, too!)

While I’m doing that, the Night Ridah has been called back into drumming duty with Shiny Beasts. They’re playing a ton lately, but if you haven’t seen them yet, here’s a taste:

 

Also, The Figgs are on tour! With mighty team captain Pete Hayes out with the Figgs, the Maybe Sump’ms won’t have enough time to train for the ride, let alone get the shows together.

The Figgs

So, while we won’t be seeing you for Crash Safely this year,  come see us! I think we’ve got a wide variety of options to choose from- see you soon!

 

Did you know?

The Maybe Sump’ms already rode around NYC last weekend, but you can still donate! In fact, we could really use the help! Keep in mind that 100% of the proceeds from Crash Safely also go to same pool and help fund crucial research into MS, patient assistance programs and fellowships for MS specialists.

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In fact, ECTRIMS (the European Committee for Treatment  and Research In Multiple Sclerosis) just ended and highlighted some major research breakthroughs, including:

  • “NEDA”- No Evidence of Disease Activity as a standard of care for people with relapsing forms of MS (This has NEVER been an option before!)
  • High dose Vitamin D improving cognitive function in MS patients
  • The effect of melatonin and seasons on relapses
  • Still in clinical trials, Ocrelizumab may be the most effective MS drug, even in  hard-to- treat Primary Progressive MS

THIS is where the funds go from Crash Safely.  THIS is why we ride, why we play.

On Roddy, Wrestling, Rock and MS

If you’re friends with musicians, look around your social media feed(s) right now.  Chances are good that you’re being swamped with photos and memorials for Rowdy Roddy Piper, the original pro wrestling Bad Guy. He was instrumental in the Rock and Wrestling thing that exposed many of us to the over-the-top wrestling characters. Piper was a big influence in my life as well, and quite possibly the reason I was able to survive a near daily barrage of threats and violence that today get lumped neatly into the word “bullying.”  I had a jacket airbrushed with his logo and it became armor in a way for me.  People left me alone, rather than try to figure out why I suddenly was sporting jacket that said HOT ROD in lightning script on my back. Later on, some of my very best friends were made based upon my ownership of a Piper T shirt. Roddy Piper had a lot to do with how things panned out for me…

More influential (especially on my pick of sun protection) was They Live, which featured this classic scene:

News of Piper’s death hit me hard, and last night, The Night Ridah and I started looking up some of the classic Piper clips online. Eventually, we came across the infamous “whack Captain Lou over the head with an award” clip.

What was the award for?

Fundraising for Multiple Sclerosis.

Captain Lou’s brother died of MS and Lou became very involved in fundraising, getting Cyndi Lauper involved as well.  At the time of the whack, it was announced that they had raised over 2 million dollars for MS.  In the 1980’s.

captain lou

So, yeah.  That was a time when there were no MS medications. None.  The best a patient could hope for would be some IV steroids every so often for flairs and a sympathetic physical therapist. (Go ahead and make that steroid and wrestling joke.)

All of this comes on the heel (ha) of the first official lineup announcement for Crash Safely- 10/17 at the Midway Cafe.

The Midway, last night, hosted the B.L.O.W.W.- the Boston League of Women Wrestlers.

The Midway, where I used to write music reviews  with fellow Roddy Piper fan Joe Coughlin.

Here are the details for 10/17:

$10, 21.  Tickets: http://midwaycafe.com/our/details?id=101710  Le Facebook event

Starring:

The Sprained Ankles

Muck and the Mires

The Dents

The Phil Aiken Army

Gymnasium

Maybe someone will be cheeky enough to cover this tune:

Now if you’ll excuse me, I’ve got some answers to alter.  Someone changed the questions again.

 

Prepping already!

Coming back from the BikeMS awards dinner is always energizing, as is MS awareness week  month. We’re still in awe of how much better we did this past year!   Things are rolling along, and we already have some stuff in the works with places and people, but as always, we need to know what you’d like to see! Because this poll doesn’t allow you to choose multiple things, we’re allowing you to vote as many times as you wish, so if you’re still really bummed you missed out on last year’s Les Paul Future Tribute, here’s your chance to speak up and let us know to ask vendors for more things like that.

 

 

Know of any companies that you think would be a good match for us?  Comment on this and let us know!

Thank you for your help!

NYC (we hope) and planning for this year’s shows

So… the snow in Boston seems to never end.  We’re hoping that this won’t mean another delay/cancellation in our trip to New York for the BikeMS awards dinner, in which we find out how Crash Safely fared against the others who participated in the ride last year.

While we wait, the harsh Hothscape of Boston’s streets is keeping us occupied…

deep hurting gif

As are streaming episodes of MST 3k.

 

In order to keep from going crazy, we’re starting to get things up and running for this year’s Crash Safely!  We already have one venue ready for us and one brand new band! As always, we invite you  to get involved in whatever way you’d like! Comment on this on or Facebook page or email Amanda and we’ll include you!

 

It’s our fifth anniversary this year, so it’s probably worth celebrating, don’t you think?

Prepping for the awards ceremony in NYC!

We’ve been quiet here at Crash Safely for a bit.  Why? Well, we’re changing around the main website (so pretty!) and we’ve been making more of an attempt to get out and see everyone instead of holing up for the winter, as usual.

The Maybe Sump’ms have once again been invited to the BikeMS NYC awards dinner, which is next week.  There, we will get the final numbers for our fundraising standings- not just for the team, but for the individual riders as well.  “Individual riders,” in our case, includes Crash Safely.  Our take from the shows, raffles and auctions in 2014 exceeded any of our previous shows, so we’re hoping to see a big bump in our standings!

There we are!

There we are in 2013!

 

The Cat Bike Gang will be making an appearance at the BikeMS NYC awards ceremony next week.  We figure it’s our duty to rep Daykamp Creative at the event.

 

We’re also already getting things ready for this fall.  It’s our anniversary, so we’d like to do some big things.  Interested in being part of it?  Email Amanda and and we can find a great way to include you this year!

Night 3 Round up!

Township

White Dynomite

The Field Effect

TRiPLE THiCK

Animal Hospital

 

All hosted by Jake Jampel and D-Tension!

 

Up for grabs ONLY at this show:

Jillian’s after work party for 20!
Grafton Street/Temple Bar/Russell House Tavern gift certificate!
OtterBox gift certificate!
Somerville Grooves gift certificate!
In Your Ear! gift certificate!
Artwork by Melissa Winter Weiss!
Tickets to the The Institute of Contemporary Art/Boston!

 

 

 

Also:  The Alex and Ani bracelet set will be auctioned off tonight!

Alex + Ani set

The winner of the Gibson Les Paul auction will be able to take the guitar home tonight before Township’s set!!!

LPTRFW5CH1-Finish-Shot

The other auctions will continue through Saturday afternoon, so make sure you place your bids on:

Studio time, including full day sessions at the Bridge Sound & Stage, Q Division, New Alliance, Zippah, or with Matt Girard, music video production, time with Dave Minehan, and mastering at Peerless, New Alliance East or Galaxy Park.

Date Night:  A combination prize featuring Odyssey Cruises Boston and Sheraton Boston Hotel

What’s included in that prize?
A dinner cruise for two on the Odyssey (worth about $230!) and a hotel room for two at the Sheraton Boston (worth about $300!). You don’t have to use them on the same night. Also, you can give these as gifts if you happen to know someone who would really, really love these!!!

 

A trip to Cancun for 5 days/4 nights!!

 

Grab your tickets and plot your winning streak at the raffle/auction table!

Don’t forget!!!

All of the proceed for the ticket sales, raffle, silent auction and The I Want You’s single, “Blame It On Tomorrow” go to the National MS Society.

 

 

Night 1 round up!

9/27 is coming up fast! Are you ready for an awesome night of music and prizes for a great cause?

The Figgs

Watts

Gene Dante and the Future Starlets

The I Want You

As The Sparrow

All hosted by Pete Hayes!

 

Up for grabs ONLY at this show:

 

Death Wish Coffee Gift Set (we’ll be peeling you off the ceiling of the Midway if you attempt to down all 5lbs of Death Wish at once, trust us)

Bowling for 6 people at King’s (including shoe rentals)

Enough Redbox  gift certificates to keep you company on a cold winter night

Signed photo of New England Patriots’ Vince Wilfork

Two tickets to NY Skyride (up your Bacon number instantly!)

Newbury Comics gift certificate

Plus:

-Handwritten lyric sheet to the Figgs’ tune “The Bar!”

-Rare and vintage Figgs merch!

 

Grab your tickets, and while you’re at it, check out our silent auctions for everything from studio time to vacations to cruises to guitars to even more coffee (we love coffee, can you tell?)!

 

All of the proceed for the ticket sales, raffle, silent auction and The I Want You’s single, “Blame It On Tomorrow” go to the National MS Society.

Think you don’t know anyone with MS?  Think again:

Nick

Tricia

Amanda

Anonymous

Meet the Bands: The I Want You

Earlier this year, the I Want You made the Improper Bostonian’s Loud and Clear list of their favorite local acts.

They’re one of our favorites, too.  They even decked out in Teen Beat t-shirts at last year’s Crash Safely because they were sharing a bill with Cotton Candy.

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Top Notch and First Rate.

 


We’re excited to have them back, especially during  Pete Hayes‘ night!

0806Feat_TheIWantYouPC1

Even more of a reason to love them? They’re new single! Produced by fellow Crash Safely participant Pete Weiss, they’ve decided to donate all money that comes in through Christmas 2014 for the single to Crash Safely! Pay what you want for your copy and it will all go to help patients with MS and support research to help end MS, too.

Catch them on Night 1 of Crash Safely with that warm, fuzzy feeling of having already given to a great cause twice over!