Navigation Bar

Saturday, August 12, 2017

Erin's Day For ALS Awareness

Erin's Day For ALS Awareness

I've been trying to wrap my ahead around the task I've set for myself - keeping Erin's
memory alive, raising awareness for the disease that took her (including figuring out and holding myself accountable for whether or not ALS is actually a disease or a disorder, and whether or not there's even a frickin' difference when all is said and done. Putting a pin in the fact that my last sentence was probably maddeningly long to read, I do want to spread awareness and raise money for research on the disease that I've heard too many people ask, after I tell them about Erin's Day, "What's ALS?"

It's always interesting when news pops up about something when you're constantly thinking about it and researching it. Radiclava, the first new treatment for ALS approved for sale in 20 years, showed up in the news mere months after Erin died, inciting hope for living fighters for the first time in far too long. A week ago, I read an article on People.com about Steve and Hope Dezember - Steve had been diagnosed with ALS shortly after meeting Hope and they have been fighting together ever since. And with the recent loss of Sam Shepard to a hard fought battle with ALS, it seems that the disease is front and center for now.

This search for information has shown me a lot - I officially have a Pinterest board dedicated to ALS-related pins - and it's also thrown me for a loop. To clarify, I'm dealing with a little bit of guilt right now, because the information has really been out there all along - and if it's been invisible to me, then it's invisible to plenty more, because in many ways I'm about as 'basic' as they come. So, if nothing else, this last month has strengthened my resolve to raise awareness and continue to raise dollars in Erin's name.

Additionally, I've been blessed to have my Goddaughter (Erin's eldest daughter) Danielle and her daughter (my tiny little Sweet Pea of a grand-niece) with me for the last couple of days - they'll be here only another week or so, but it had been since Erin's funeral that I hadn't seen them in person. Erin raised a brilliantly strong woman before she passed on, and I don't doubt for a second that Danielle makes her mother proud daily as she continues to fight the good
fight in her own personal life. I'll admit it's also been a little tough watching those little mannerisms that scream 'Erin' - my heart sings and breaks every time Danielle smiles or chuckles because... well, there's Erin. And looking into Dani's eyes? Erin. Danielle even holds her daughter the way Erin held Danielle was Dani was the same age. I think Dani must have seen the pain in my eyes (sorry about that, Munch) because she confessed a couple of days ago that she tried to turn away so that I wouldn't see how she cuddled her daughter, knowing it was the way Erin comforted her. I told her I'd rather see Erin in her every single day than to forget what my best friend looked like.

So, about that video...

To you, reader, I ask - have you made your video yet? Have you challenged your friends? The only way to spread the word is to actually spread the word, right? So make your video, babies. SING. SPREAD THE WORD. DONATE. #ALSawareness #ASongForErin #RIPQueenSaphire

RIP Erin 1977-2017

Sunday, July 23, 2017

I Should Spend My Life At 'Nerd' Cons

I Should Spend My Life At Nerd Cons

...among other things. I saw, won, swooned over, and bought the coolest shit at Arlington's Annual ArlingCon, a friendly neighborhood Con that's seen a surge of popularity during the last couple of years. Nerds from all over Texas and beyond don their best cosplay and basically peacock in the most amazing way among some of the most fun indie-style vendor booths and typical 'nerd pros' ever. Seriously, guys? I was in Heaven for most of Saturday - typical of me to have forgotten that it was running at UTA's E.H. Hereford University Center in Downtown Arlington, TX until its last day.

The cosplayers were out - in full detailed garb, thank you very much - in droves, swarming the place in small clusters of unadulterated awesome while my sister and I spent the better part of the early evening walking around in awe of their craftmanship and attention to detail. I missed quite a few photo opportunities because my brain was pretty much on overload (Western Captain America & His Majorette, I think I regret missing you the most... oh, wait. There was also Groot. I should have grabbed Groot.), but rest assured I'll be back next year fully prepared. 

I wanted to spend the rest of this blog thanking and shouting out the uber cool folks I got to spend a little time with while I wandered around the Vendor area, and I definitely wanted you guys to know they existed so that you'd storm the interwebs and buy their stuff - like, now!

 

Go Indie, Find Cool Shit: You Can Link Up With Amazing People At Cons

And who doesn't like finding cool shit? I walked around the vendor tables pointing and smiling,
chattering with my sister about needing to get business cards for this one and that one so that we could both spend our respective paychecks on the fun merchandise they had been selling. Everyone's on Etsy, know what I mean? Anyway, I met some amazing people who seem to genuinely love what they do - and man, are they good at it.

 Tea Punk Teas: Civility in Every Cup

This company stole my heart from the second I saw the gorgeous looking tins and their punchy steampunk design. I can't say I'm a tea aficionado, but I know my green leafs from my black leafs; I know a Chai when I smell one. Lloyd greeted us immediately - the draw of all the pretty tins were drawing us in, but we wanted to make a lap of the vendor tables before we committed, so we were kind of standing away from the table - and encouraged us to step closer, promising us a whiff of their carefully curated loose leaf teas. And man, did he deliver - from their 'ExperiMint' green blend to an amazingly delicate but robust Chai (dubbed 'My Chai' because it is his own personal blend of leaf meant to suit how he feels a Chai should taste), my nose made its way to utopia on a train of tiny little lip balm containers filled with dried leafy goodness. When all was said and done, I went with their special Earl Grey De la Creme - a mix of Ceylon Black Tea, China Black Tea, Bergamot, Cornflower Petals, and Vanilla. Yes, babies - it is exactly as awesome as it sounds. Their prices range from $10-$20(ish) dollars and are worth every penny. They even have a code on their website that provides free shipping for all orders over $50. And when I want to own a tin for every day of the week, spending $50 doesn't seem out of the ordinary at all. Visit their website, and check them out on Instagram - if you're a tea lover, you'll be glad you did.

Fancy Dryad: Bits And Bobbles for the Fey Folk

While walking among the vendors (where I saw the phenomenal Groot cosplay that ensured I'd regret having an actual camera until ArlingCon comes around next year), my sister and I were stopped in our tracks by the sight of tiny lights, colorful glass stones, wings, and gorgeous flowery armbands. So fairy, much pretty! And then there was Amy. Probably the sweetest gal at the Convention, she showed us all of the pretty fairy-inspired baubles she had for sale, including fairy dust catchers that I immediately wanted to hang from every corner of my house and fairy lights, the adorable craze that I've so far seen in no less than six events this year. 

The vibe of Fancy Dryad reminded me of being in a forest surrounded by tall grass and trees, where I'd certainly be sitting in the center of it all as quietly as I can, trying to see if I could actually spot a fairy or a sprite. And her business cards made my heart swell a little - handwritten, with a tiny gem at the corner, you could not ask for a more charming touch. Would you just go visit this girl's Etsy page, please? She's too goddamn adorable and I want her to sell a million light up fairy dust catchers.


Elia In A Box: Everything in Life I Didn't Know I Needed

Guys, if you haven't heard of Elia In A Box, you need to know how cool this website is. Elia is basically a webcomic where its creator, Eliamaria, posts all sorts of content surrounding her artwork. She's not Jack Kirby or Robbi Rodriguez (names I only know because of my knowledgable nerd friends), but she brings a simple style to the table and presents it with an attitude that's all her own while being everyone else's attitude at the same time. I loved the edge to her work from the moment I saw it - the plan, at this point, is to get that 'Never Shank A Baby' (wise words, by the way!) in my living room ASAP. Go check her out on StoreNvy and, if you like what you see, pick something up. It's beyond important that we continue to support local and indepedent artists. They work hard to live the dream - if anyone understands and battles for supporting the local scene, it would be me.

 

 

I Never Remember How Much Fun I Have Until I'm There

 

True story, babies. I love cons, I do. And I never remember how much I love them until I'm there and all is said and done. I've gotta participate more - there's a whole other world out there beyond the spangly trailers, crowds, and massive troll population at SDCC and NYCC. Easy there, I'm not knocking the major leagues at all, I'm just saying that it's worth it, if you're a Fanboy, Fangirl, Gamer, or just Nerd-In-General, show some love for the smaller conventions. You probably won't get to stand in line for six hours to meet and greet a celebrity, and you definitely won't get to catch a sneak peek of the latest trailer in the MCU. But the people that participate in these conventions work hard, and love what they do - it's a guaranteed good time if you jump in with both feet and embrace all of the scrumptious nerdy vibes.

To the DFW Ghostbusters: I'm happy I found you. Probably more than I should be. Laser Tag on July 29th sounds ridiculous - and I mean that in the best way possible. Readers, if you're in Texas - go see them. Or just check 'em out on Facebook, like everyone else does. 

Shout out to the group of cosplayers who dressed up as the characters from Five Nights At Freddy's - it was hot as fuck that day, and those cats gave it their all and walked around in what looked like the heaviest, most uncomfortable bundle of felt, cardboard, and moving parts I've ever seen. They won 2nd place in the Cosplay Contest, by the way - just behind a pretty cool looking Link who dropped his phone onstage when he presented. I'm not hating on Link at all, but - look at those costumes! The walk across the stage looked... daunting, to say the least. Yeah, I'm regretting the 'not having a camera' thing.

 
Oh well, ArlingCon - until next year. And I may or may not be looking into having a booth for it - a few of my books... random merchandise... some nerdy treats, perhaps? CapCakes, anyone?
xo,
Sami

Tuesday, July 11, 2017

Erin's Day for ALS Awareness

 Erin's Day for ALS Awareness


Today marks six months since my best friend's soul was released into the Universe. I cry less, but I miss her just as much. Her absence still hurts, but I still see her everywhere. I'm not surprised, because our souls are tethered, but it's always a delight when she appears from seemingly out of nowhere. And my reaction is almost always the same. My eyes flutter shut; I smile. I can feel my center glowing. And then I say, "Hi, Ren."





Six months months of trying to cope with the most painful loss in my life to date. Six months of wanting so much to make Erin proud and keep her light shining, only to be (sort of) held back by random crying spells, crippling depression when my brain refused to let my body move. I wanted so badly to learn more about the disease that took her, and to figure out how to get my brain to figure out a) how to make sense of it all and b) how best to educate and raise awareness about what ALS and similar neurodegenerative diseases like it do to those affected, both directly and indirectly. 

First, I learned the root of the terminology - something I'm sure Erin did way before I thought to do it. The origin of the word, according to a couple of sites, is Greek (fam, did you hear Erin quote directly from 'My Big Fat Greek Wedding'? I totally did.). And, based on the infograph below (which seems to be the accepted word breakdown), Amyotrophic translates to 'No Muscle Nourishment'. Then of course, the word Lateral refers to the area of the spine that is attacked, while Sclerosis refers to the hardened state of the spine in the disease's advanced stage. There you go - words telling you exactly what ALS does.


image credit: cbc.ca
Second, I learned that Erin's type of ALS (likely familial) only occurs in 5% of all cases, which means that 95% of the 30,000-33,000 diagnosed are completely sporadic. What causes ALS? According to MDA.org, while scientists do know that it isn't transmittable, the idea that people are pre-disposed to having it, but only develop it after coming into contact with an environmental trigger is still just a theory. The spiral I spun into wondering what that trigger was for Erin left me in a fog for days. Additionally, it is believed that some folks who have been diagnosed with a sporadic case may carry ALS-causing genetic mutations that can be passed on to offspring. It weighs heavy on mind that the string of ALS related deaths in Erin's family could have potentially began with a single sporadic case and grew to become the equivalent of a fucked up family heirloom. It makes my heart hurt, and it makes me fear for my Godbabies - I don't understand this life, and how things like this come to be, but that's another post for another time. 

ALS occurs the world over with no racial, ethnic, or socioeconomic boundaries, so not only is it important to keep the conversation going about the existence of neurodegenerative diseases (which, with the rapidly increasing use of chemicals in our food and water supplies, said diseases are becoming more common) like ALS so that research and medical advances can continue, but it is super important to know the warning signs as early as possible to prolong life. 

Currently: 
  • 50% of those affected with ALS live at least 3 or more years after diagnosis.
  • 20% live more than 5 years, and
  • Only up to 10% will survive more than 10 years
We can help change the conversation. Through awareness comes donations, and through donations comes continued research and, eventually, advancement. And with advancement, maybe someone else's sibling or parent can be save. Maybe, somewhere down the road, someone's Erin won't have to die. 

I thought long and hard about how to continue to spread ALS awareness and it brought me back to the Ice Bucket Challenge. It was fun, it was inclusive, and it raised a record amount of money that certainly could have helped lead to the FDA's approval of the first new treatment drug in 20 years.  

Songs were happening here.
That's when it hit me: Erin loved music. And she couldn't exactly carry a tune, but she loved to sing and let the music take her away - especially when The Snack Pack was involved. And one of the beautiful things about her was that she was everyone's biggest fan; she admired and uplifted anyone and everyone passionate enough to put themselves out there and present their art to the world. 

So my campaign is simple: Sing. The genre doesn't matter (Erin loved them all, for the most part), whether or not you can carry a tune doesn't matter. The message is love, the message is awareness - whether it's karaoke, CARaoke (hint hint), or accapella with a couple of friends in front of your desktop. Then make a video - it can be a full song or half a song. The script is simple: 

"Everyday an average of 15 people are diagnosed with ALS and, while there are treatments to prolong life, there is still no cure. So Sing. Spread the Word. Donate."

And donate.  Visit ALSA.org/donate to leave your gift before challenging your friends to do the same. The hashtags? #alsawareness #fuckals #asongforerin 





Here, I'll get us started:


Ren,

I know you're watching, and I know you're loving this already. I miss you every day. 

xo,
Manfa

Erin Danielle Nelson 1977-2017

Monday, June 12, 2017

Erin's Day for ALS Awareness





The 11th seems to come around more quickly these days. And I missed a blog post. But bear in mind, I did not forget. 

Life just got away from me this month, and I didn't get to do the level of research I wanted to. 










But I'm happy to report that Erin's UZN Chapter had their annual barbecue in the Bronx, and they displayed a sweet tribute (see above). Next month's post will include information, but for now I remember my sister. Please visit http://www.alsa.org/ and donate if you can.











Did you know? Caldwell B. Esselstyn, MD was Lou Gehrig's personal physician after his diagnosis. He founded The Rip Van Winkle Foundation (dba The Lou Gehrig Society), an organization devoted to identifying and promoting policies, techniques, and programs that prevent disease. Visit http://www.lougehrig.com/rvwf/rvwf.html for more info.


Ren. 1977-2017