Fruit Straw Kabobs on Retro Party Straws

Fruit Straw Kabobs

I thought I’d share a quick and easy DIY project using our Retro Party Straws: Fruit Straw Kabobs! They took just a few minutes to make – all I did was poke holes through the fruit with an object smaller then the straws, then slide the fruit onto the straws! It’s as easy as it sounds!

Our retro party straws are Made in America with non-toxic, FDA Approved food safe materials. They contain no BPA and are 100% Chlorine Free! They are also compostable in 45-60 days, but durable for several hours in liquid!  Buy them at littlefreeradical.etsy.com

TIPS:

  • Since the straws are paper, I wouldn’t recommend doing it the night before your party! Wait til an hour or two before!
  • *a paintbrush, meat thermometer, or plenty of other random utensils in your kitchen drawer would work for poking the holes!

 

Photos: Custom Chevron Mickey Hat

 Back in November, a customer contacted us asking if we could customize our Mickey Mouse Fabric Birthday Hat to make it with red chevron instead of red polka dots!

So we did! And she sent us these adorable photos taken by Still Frames Photograhy!

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          I love the photos, and I love that little face! :)

Photos: Custom Bunting Flag Banner for Cake Smash

 A couple weeks ago, another Etsy seller, MissTiina, contacted me, asking for a custom bunting flag banner for her son’s cake smash photoshoot for his first birthday! We found fabrics in the colors she was looking for, and she was nice enough to send us a few photos – taken by Sheri Lynne Photography in Thunder Bay, Ontario!

What a little cutie!

 

Looking for a custom bunting? Send us a convo on etsy and tell us what you’re looking for! $25 for the first 7 flags and $3/each additional flag! :)

P.S. if you’re in the market for kids room art, check out MissTiina‘s Etsy shop and her website – misstiina.com :)

DIY Retro Straw & Paper Cup Reindeer

Estéfi Machado shared this adorable idea on her blog this week with retro party straws, so we thought we’d show you if you’re looking for ideas to make with Little Free Radical’s Retro Party Straws!

 

Supplies Needed:

2 Retro Party Paper Straws
Scissors
Hot Glue Gun
Red Cardstock
Permanent Marker

Her blog is in Portuguese, so here ‘s Google Translate’s rough translation into English:

  • 2 straws of paper, cut into 4 parts
  • In the photo you see the proportions, 1 large, 1 medium and 2 small.
  • It is not a rule, but it helps to look that elk horn.
  • Make diagonal cuts always, it helps to mend the pieces!
  • Hot glue or instant, and then shove the whole horn in a hole made in the side of the cup.
  • It all fit, no need to paste into the cup.
  • Make the 2 sides.
  • The little ears are 2 pieces of red cardstock, which also sunk in the cup, making a “butcher”, a rasguinho with stylus.
  • And finally, little eyes and muzzle permanent marker!

check out the photos on her blog of step-by-step how she did it,

and be sure to go tell her you love her if you love her idea!

And Little Free Radical is currently well-stocked in straws if you’re looking for some! :)
We just got brown in as well if you want brown antlers!

NOTE – Reindeer Cup Photo Credit – Estéfi Machado

UnconVENTional Aid: Helping Nick Dupree – Part II

I thought I would post an update to my first post, UnconVENTional Aid: Helping Nick Dupree, Social Networking Style.

Many people asked about simply evacuating Nick. Evacuating a person with a disability, isn’t as easy as evacuating an able-bodied person not attached to ventilators, and other medical equipment. In fact, the Red Cross told me, “we can help him, just get him to an evacuation center.”

Here is an explanation from Nick, as for why this is not possible for HIS unique situation:

All federal, state and local policies insist I go to the hospital. But that is the most dangerous place for me.  Hospitals’ normal assessment and care processes have been stricken with liability sclerosis: liability first, human life second. Hospital policy is they only allow hospital ventilators. Because of liability fears surrounding hospital staff operating ventilators they’ve never been trained on and the hospital does not own, the policy is non-negotiable: I’d be taken off my vent, put on a hospital vent. This almost destroyed my stoma in ‘08. I’d be toast if that happened again. So I don’t see evacuation to a hospital as an option. I wish there was a hospital I could trust to “first, do no harm,” but right now I just trust them to a) put me on a ventilator that will maim or kill me b) not have enough staff to feed or medicate me, because they have genuine emergencies on their hands. I am from Mobile, Alabama and was there until 2008; I tried to go to USA Children’s hospital when Hurricanes Georges and Opal hit the Gulf Coast and no beds or medicine were forthcoming (plus, the hospital lost *their electricity* stranding us in our wheelchairs staring at dead elevator doors for hours during Opal) which forced us to un-evacuate, go back home . Rode out Danny, Ivan, Katrina and more on batteries. I’ve been there, and some EMS guy I’ve never met yelling I need to be with TRAINED PROFESSIONALS (as my RN is standing next to me—lol) isn’t impressing me. Education on vent-dependent people is badly needed.

We are condemned as “against medical advice” for not evacuating to hospitals that were evacuated or in danger of evacuating. The story of NYU’s generator failing and all the NICU babies have to be taken off failed ventilators and bagged is horrifying, as are the stories of Bellevue, NYU Downtown evacuating. In Soviet ‘merica, hospital evacuate you. But all these horrible stories are unlikely to spark the change needed. If medical advice is to put yourself in those horror situations, I don’t mind being against it.

In addition to these the risks Nick explained with going to a hospital, there were other factors to consider as well. Like the fact that he’s on the 12th floor of a building with no power, and therefore no elevator. Of course buildings have stairs. That’s how we were bringing batteries and supplies to him. BUT the staircase was pitch black, and extremely narrow and very steep. It was hard enough for volunteers to safely carry batteries and water up 12 flights of steps. after a trip or two they were exhausted. Trying to evacuate Nick would have been an extremely difficult task and may not have been physically possible due to the staircase itself. Had we tried that option – even with EMS, Fire Dept, etc – Nick may have been seriously hurt.

It was much easier in this case (as complex as it was to coordinate) to bring batteries to provide power to Nick, then it was to bring Nick to the power.

In addition to those risks, many of the “evacuation centers” in the area were not wheelchair accessible, if we got him to one of those as the Red Cross had suggested. Portlight Strategies (a non-profit dedicated to helping people with disabilities in natural disasters) posted a few photos taken of some evacuation centers in NY on their facebook page. Here are some of the types of barriers Alejandra & Nick could have encountered by trying to evacuate:

(Top Left) This evacuation center was up a huge flight of stairs… (Bottom Left) a very steep make-shift ramp – many power wheelchairs would not be able to climb it. (Bottom Middle) A sign telling people to ask security for access assistance, except that security is inside at the top of the stairs. (Top Right) another photo of a steep plywood “ramp” (Right Middle) accessible doors  here are locked (Bottom Right) Bathrooms in these places may not be wide enough for a wheelchair to get into.

So, after Sandi Yu and I went down to Lower Manhattan the first time, to get things set up on car batteries & an inverter and found it to be a successful plan I talked to his respiratory company (who we were finally able to get the name of) and the therapists first questions were, “You’ve got the ventilator running on a longer battery, but what about the oxygen concentrator, the suction machine, and the cough assist?

Since I’m in a wheelchair, I couldn’t get up 12 flights of stairs to go SEE what needed power the night before. I knew the vent was the #1 issue for power, but these other things are also important if we wanted to keep Nick healthy/medically stable. So I put the word out that we needed additional batteries & more inverters to plug stuff into without overloading the initial set up. We wanted deep cycle marine batteries this time (Walmart had none at 2 am when we initially went) since they would work a bit better then car batteries.

I put the word out, others started spreading it using social networking, and a friend of a friend, Leanna Graham, was able to find an inverter at Radio Shack, and bike it across NY to Lower Manhattan to get it to Nick. YEAH!  Anna Jacobs was able to find us several marine batteries, and a couple 6 AMP & 10 AMP  chargers at Sears and AutoZone in Brooklyn, but getting them across the city into lower Manhattan was a challenge batteries are heavy, not the type of things you can just throw on a bike, plus the gas shortage in NYC was a big problem and HOV (High Occupancy Vehicle) was being enforced. But we were able to use donated funds to get cab fare to bring additional batteries in Thursday morning.

Thursday, November 1, Alejandra (Nick’s partner) was interviewed on NPR, Talk of the Nation sharing her experiences first-hand. You can listen to it here: Sandy Especially Tough On Vulnerable Populations

Nick  Dupree & Alejandra Ospina continued to need supplies brought in and USPS, FedEx and UPS didn’t seem to be an option, so Thursday afternoon, I started looking for more people in Boston willing to do another middle-of-the-night roadtrip. That’s when Gisela Voss stepped up. We barely knew each other – she was the designer for B. toys (sold at Target), and I “met” her on B. toys facebook page leaving “happy customer feedback” (which she was an admin of), then met briefly her in person last summer on Rabbit! band’s tour. We’ve had occasional contact with each other for the past year, became “Facebook friends” on Sunday afternoon, intended to get together next week, but found ourselves planning an emergency road trip together on Thursday.

Of course with NYCs HOV-restriction in place, we needed 3 people, so if we couldn’t find a human passenger, Gisela, being the creative person that she is,  volunteered to bring her scarecrow decor to look like additional passengers in the back seat – hahaha! – but really, it was more ideal to have 2 drivers to rotate (my license is medically suspended), and 2 people to carry up supplies since I’m in a wheelchair and couldn’t assist with that. So, she recruited her sister, Karin Bolt. I rolled around my neighborhood, on the phone with Carrie Lucas (in Colorado) collecting supplies as she told me what Alejandra was reporting was needed (paper towels, trashbags, batteries,  non-latex gloves, etc). Got all the supplies together, hopped in the car with Gisela, picked up (and officially met) her sister, and off we went.
I’ll let Gisela Voss’ tell it from her point of view:

“When in doubt, DO something.”
“When in doubt, say YES.”

With hurricane Sandy approaching we buttoned down the hatches on our Hull house and bought extra batteries for our flashlights. I never imagined where this week would take me. I got phone calls from as far away as Peru and Germany from friends and family checking on us. All OK within “my” circles. But what if I opened my vantage point a bit wider? What of the concentric circles a little further from my center? My sister’s in-laws had a tree fall thru their roof in Atlanta. All OK. My friend Lisa was cold in her house with no power. Offered our extra rooms. All OK. My friend Suwin posted photos of the destroyed Misquamicut beachfront in Westerly, RI yet those she loves OK.  A bit wider…I saw photos of New York and New Jersey and was awed by the devastation. Feeling small, not knowing how to help I went on with my day. Until….until Crystal, someone I met briefly only once, posted a plea for help on her Facebook page. A man she knew online but had never met in person was running out of batteries for his life-sustaining ventilator—in lower Manhattan, up 12 flights of stairs, 5 hours away by car.

YES.
Let’s go.

YES and DO are small words. But they achieve great things. And if in doubt, ever notice that “what the hell” is always the right decision? I could sense Luke with me, smiling that “do bigger” smile of his. He would not shy back from the long night, or the road blocks in NY, or the unknown. A friend needs help? What are you waiting for?

Who else would ride in this car with me to fulfill the HOV (High Occupancy Vehicle, an acronym I never knew before) requirement? Of course my sister Karin said SI.

With an extra 10 gallons of gas in the trunk, 4 marine batteries, medical supplies, some snacks for our ride, and Crystal’s wheelchair we drove. One last gas fuel-up in CT and we approached Manhattan. Past the toll signs HOV mandates. Driving along everything seemed kind of quiet, almost normal. Until we entered the twilight zone. Darkness in Manhattan. Unreal—an island of darkness in a sea of power. The city that never sleeps—asleep. On Broadway heading to TriBeCa the only lights were my headlights. Passing block after block after block of camouflage army vehicles lining both sides of the street, only an occasional flash of bright was visible—the diagonal reflector stripes on the armed National Guards patrolling the streets. I was ever-thankful for my car’s GPS because it was hard to even read the street signs. My atrocious sense of direction had no idea we were in Union Square until I saw my favorite NY store, ABC Carpet & Home. Still more blocks and blocks of darkness in Gotham. Did Batman ever drive his Batmobile through black New York? It was eerie and creepy, apocalyptic.

(Top Left) Manhattan in the Dark, (Bottom Left) Gisela Voss & Karin Bolt, – Gisela was a bit excited to have reached Nick’s House! (Top Right) a section of a block lit with a big generator light. (Middle Right) Driving into the darkness of Lower Manhattan. The only light we had through much of the area was our car headlights (Lower Right) The fire station near Nick where we were recharging batteries

We arrived at our destination. Easy part over.

Leaving Crystal in the car (and feeling worried-bad about her being stuck there if anything at all happened), Karin and I unloaded the supplies and only then truly felt the weight of the batteries. “Oh My God, these weigh a ton!” we kind of chortled. 12 flights ahead of us.  The doorman did not even offer to help, or hold the door as we juggled bags in. Then he smirked as he directed us towards the staircase. When we got there we saw why. This was a 3ft wide (ehem, THIN) very steep and completely pitch-black staircase. Thankfully Karin’s boy-scout boys lent us their headlamps because we needed both hands to carry the stuff. I could only handle the battery cradled on both of my arms. Huffing and puffing like the big bad wolf we slowly walked up. Step by step by step. Counting flights. 6th floor—halfway there!—9th floor—just a little more—lean on the wall on the left—lean on the wall on the right. Adjust weight. Step step step step step step step. Eureka—12th floor!

The very first words we heard made the whole trip worthwhile: “just in time!”, exclaimed Alejandra, “his battery is almost out of power.” Their nurse quickly connected the new battery, and Nick said a deep and genuine throaty “thank you” seemingly through his trach. He laid on a bed attached to machines, typing out his “Nick’s Crusade” writing. It was 3am and Alejandra was awake in her wheelchair waiting for us.  We were huffing about WALKING up the stairs? Never before have I been so immensely aware of what my body is capable of doing. And feel so humbled at the magnitude of grace and strength others have to muster just for their day-to-day living.

With newfound vigor Karin and I bounded down the stairs ready for another trip back up.

YES.

Here’s a video we took while going through there, to give you a small taste of what its like actually driving through there:

While Karin & Gisela were carrying supplies up to Nick, Alejandra & I were messaging back and forth, as she finally had stable cellphone signal, so I could explain to her what we had brought. When Gisela came back down she told me, “Nick says ‘thank you.'” Several minutes later, Nick posted his first facebook status   this week:

Yes Nick, your life IS worth saving. :)

We got back in the car, and went home, and an hour after getting home, I met with WBUR, (Boston’s NPR News Station)’s producer, Nate Goldman and explained the whole situation with helping Nick. It will air on Monday as part of the Kind World series. While I was interviewing, Gisela called into  NPR’s On Point Surviving Sandy. (at 18:48  in the recording, she shares her experience going to help Nick).

Finally, early this morning, we got the update we had all been impatiently waiting for:
Nick’s ventilator and other medical equipment can finally be plugged into the wall! No more marine & car batteries!

Nick updated at 5:30pm with this:

Power came back at 4:30am. Normalcy slowly returning. Thank you so much for the amazing support, people have been so incredible, biking across the brooklyn bridge with batteries, huffing up 12 flights of stairs with recharged ventilator batteries every 3 hours, cannibalizing cars for their batteries, even helping out directly with my hands on care. That is the story here, human kindness on a previously unimaginable scale organizing virally online divvying up Q3 battery shifts and other tasks—such an amazing example of how the web, Google docs, Facebook, can enable spontaneous order to do good works—to keep me alive and at home, not a footnote in a tragic hospital story. The best people ever coming here, keeping me going despite TriBeCa being dark and abandoned like a scene from I Am Legend or The Stand, keeping me going despite very steep and difficult stairs, keeping me going so my life and all I want to do can continue. I’m so full of gratitude, overwhelmed by this. I didn’t know I was so popular. You were all so amazing, and I’m so grateful for the upcoming help y’all will do as we go into normalcy and beyond into new things. THANK YOU THANK YOU THANK YOU Thank you thank you thank you thank you!

But of course Nick & Alejandra having power doesn’t solve “everything.” There are other issues Nick and Alejandra have to work through the next few weeks. They are still without water. Additionally, transportation is a significant issue with getting nursing staff to him for his routine care. New York City still has a gas shortage. Public transit is not running to lower Manhattan, and ConEd expects weeks for proper power to be restored to MTA and water has to be pumped out of the tunnels. The red arrow is Nick’s subway stop. There is no service at all in this area.


To keep nursing care coming to Nick, Portlight Strategies, is continuing to fund taxi costs for Nick’s nurses as he requires 24/7 skilled nursing care at home (Independent living is a far better solution, and more cost effective then the 378 days he spent institutionalized). In addition, Portlight is providing emergency assistance for others in NYC/NJ that are disabled and needing emergency assistance (Donations to Portlight also helped fund a significant portion of the battery costs to power the ventilator and medical equipment for Nick this past week). At this point, the best way you can help Nick continue getting proper medical care the next few weeks, as well as others in similar circumstances throughout New York and New Jersey at the moment is a tax-deductible donation to Portlight.

UnconVENTional Aid: Helping Nick Dupree, Social Networking Style

As you all know, being the creative type that I am, I love do it yourself projects… however, I found myself in the middle of a rather unusual project, which involved a lot of creative “thinking outside of the box” and it was more then just a do-it-yourself. It was more of a “do it ourselves” project. and we did it. successfully. Here’s the story of how we helped Nick Dupree.

Like many people, I spent Monday watching CNN. As they started showing video footage of the extent of the damage in Long Island, NYC, and New Jersey, I sat and watched as they explained the disaster, and the problems with NYC Hospital Generators. And then, CNN started showing the damage to Long Island, New York, where a lot of my family lives. Of course once you start seeing your relatives town flooding, you don’t want to turn off the TV. I hopped onto facebook to see if any of my relatives had updated. Before long, my grandfather posted that they were okay with minor house damage, as were several of my other relatives, except that my aunt had lost her home from flooding in Staten Island.

I sat there feeling helpless. I knew their power was out, so the last thing I wanted to do was start calling them to check on them, wasting their cell phone batteries. I knew other relatives would be checking in with them, so I decided to wait for second hand info from other family members. Then started checking Facebook for posts from friends in NYC & NJ.

It was then that I remembered Nick Dupree & his partner Alejandra were both in Manhattan. I’ve never met them in person, I’ve just known Nick for a few years online through disability groups and mitochondrial disease support forums. I checked Nick’s wall and saw a post from earlier in the day where Alejandra said that due to early shut down of NY Transit meant that it was impossible for any nurses to come provide care for Nick who has been dependent on a ventilator since 1993 due to a metabolic muscular disease. This was a BIG problem. As I read through wall posts, others were posting saying that Nick & Alejandra had lost power. This wasn’t good at all.

 

Nick & Alejandra’s 2010 Wedding

But what could I do? I was in Boston, 200 miles away with no drivers license (for medical reasons), and to book a wheelchair accessible greyhound to NY,  I’d need 48 hours notice. Plus, no electric also meant no elevator, so even if I could get there, I still couldn’t make it upstairs… After watching CNN and facebook posts, it didn’t seem like Manhattan would be getting power back soon… so since staying awake brainstorming wasn’t going to actually DO much, I finally decided to go to bed at 2am.

When I woke up a few hours later, there was still no electric for them. List of Nick & Alejandra’s needs were being posted by friends on their facebook walls, but many of these people were scattered around the country. One person, Leslie Freeman, had gotten to them to bring food. I didn’t know her, I just recognized her name as we had mutual facebook friends. I didn’t recognize the names of anyone else posting. I didn’t know who they were or where they were located. I didn’t know how to begin to help since I’ve never been in this type of predicament before.

I checked the news sites to see exactly what was going on. I knew Nick lived in Lower Manhattan. I looked at a NYC map to orient myself to what was reported as happening where. I didn’t know what else to do, so I posted to my facebook wall Alejandra’s last post:

Can any New Yorkers help out Nick Dupree & Alejandra Ospina??? Nick is on a vent, and they have no power in lower manhattan –

“Hello. Thanks everyone, for thinking of us. We, like many, finally lost power. Ventilator battery charging via FDNY generator going as planned but needs someone to take batteries up/down 12 flights. If anyone has any leads on portable power/charging/generator options, please advise. We have phones and feeding pump, suction machine, oxygen concentrator & wheelchair that could use power. We’ll probably need some food soon. This could go on a while, so ANY help appreciated.

(Evacuating to hospital is very risky for us & esp. Nick, won’t be considered unless all else fails, so please don’t suggest it.) –“

Immediately, my friend Sandi Yu, a local Red Cross employee responded, worried. Of course we both didn’t know what to do. I knew nothing about generators. I just hoped that someone else might know something and be able to help. And Sandi got on Twitter and started tweeting about the situation and contacted HopeMob.

I went on to package my etsy customer orders that came in during the storm, and did a post office run. When I came back, someone had suggested calling The Red Cross. I figured someone else must have done that already. I called several friends in NY or formerly from NY to see if anyone knew someone that might have a generator. no luck. I didn’t want to duplicate what others were doing since I’m sure the Red Cross was overwhelmed with calls. But I figured, what the heck, why not just try The Red Cross in case everyone is assuming someone else will do it? I called and explained that Nick was on the 12th floor of a building with no power and that he was vent dependent and that we needed to get some help to keep it charged since the batteries lasted only 3 hours and that they needed help getting someone to run up and down 12 flights of stairs to bring them to charge at the fire station across the street. Alejandra is also in a wheelchair so they really needed help. The Red Cross solution was to tell me to get Nick to an evacuation center so they could help him… uh, okay. I’m in Boston 200 miles away. in a wheelchair as well, so I can’t exactly get Nick, his ventilator and other equipment down 12 flights of stairs. So I posted again that The Red Cross couldn’t help. My friend and former neighbor, Robyn Powell (a lawyer for National Council on Disability), responded suggesting I contact FEMA.

FEMA? The only thing I knew about FEMA was from watching the weeks of TV coverage of Hurricane Katrina in 2005 when I was in rehab. I googled FEMA, found their website. but had no clue what to do. call an 800 number and explain the situation? Then Robyn messaged me a contact there in FEMAs Office of Disability Integration and Coordination. Whatever that office did, it sounded like what we needed. I sent them a quick email explaining the situation. and telling them his neighborhood, and that when I got an exact address, I’d let them know. I immediately got a response:

“Please tell Nick (who I’ve known for years) that I am sharing this with our disability integration specialists in NY for immediate assistance with our NY emergency management partners.”

Perfect, I thought. FEMA will help Nick. everything will be fine.

I figured I’d make one last effort and contact the Muscular Dystrophy Association in NY as Nick’s diagnosis falls under their diseases. Their lines were down. So, I called my local branch. They said they’d call NY branches to see if I could get help. So while I was back and forth via e-mail with FEMA and contacting United Mitochondrial Disease Foundation (UMDF) – another organization that helps patients with the diagnosis Nick & I both have, MDA was contacting NY state branches to see if they could help. They called me back looking for an address.  That was one thing I hadn’t yet gotten. I called back UMDF to see if he was in their database. He was not. So I went back to his facebook wall in search of people that knew exactly where he lived. Within minutes, Len Burns e-mailed me Nick’s address, and shortly after, Todd Hermon from MDA’s Albany Chapter called me looking to see how they could help. I explained his needs for distilled water, power for his medical equipment and they got started trying to locate a generator for him.

In the meantime, other facebook friends put together & started distributing a note, PLEASE CIRCULATE WIDELY in NYC – need help during the blackout, and put together a Google Document, Giving Nick and Alejandra a Hand to help coordinate items they needed as well as nursing care, volunteers to run up and down 12 flights of stairs as batteries died to go recharge them. It gave volunteers in NYC area a good starting point for what types of help they needed. And then everyone knew who was working on what – even though many of us had no clue who each other was.

I watched the list, kept FEMA & MDA up to date with emails as for what the needs were. MDA started to look for help with the skilled nursing aspect while others kept posting & tweeting to recruit help from others in NY.

But one of the most difficult aspects was, not only do Nick & Alejandra have no power, they also have no landline and very poor cellphone reception in the house. Of course this (plus dead cell phone batteries) made it rather difficult to find out their exact needs in a timely manner as Alejandra can’t get out of the house for better reception either. :(

I still didn’t know much about generators. And I had an errand to run. So I left the house and sat on the train googling for more info on generators, and keeping up with communication between those gathering info and FEMA & MDA. I stopped at Home Depot to find out more about generators. but all they had was gas powered ones. That wasn’t as safe option in a NY high rise unless there was a patio… but just as I was about to google maps a street view to see if his apartment building had patios where a generator could run from, my cellphone died. AHHHH!!!

So I had plenty of time to think think think on the train. Then I remembered – I had read an article last week on the CDC website, which mentioned, “Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.” Plan B?!?

I got to an outlet, charged my phone long enough to post to FB to see if it was possible to run the vent this way – off a car battery. it would rid the gas issue we would face with a generator. Of course my phone promptly died again. naturally.

But on the way home was an Auto Zone, so I stopped in there to ask about my latest plot. The employees looked at me like I had 4 heads with the idea. But standing at the checkout was an employee of a medical supply company. YAY! So he started questioning the vent model and who the supplier was – as they should be helping in these predicaments. But of course we were back to the  issue  of no phone access to just call Nick and Alejandra.

I went home and contacted MDA again telling them we might know our options better if we can find out the vent model. So Todd from MDA started contacting medical supply companies to see if any of them provided Nick’s care so we can find out what his Ventilator Model was or to see if they could help with emergency power options.

In the meantime, 2 others friends who use vents as a result of muscular dystrophy, Carrie Lucas and Stacy Carlson (and her husband Doug) & started discussing on my post ways to rig a vent with a car battery in these types of situations.  We just needed to know the exact model of the vent as well as the setup to see if this plan would work.

It occurred to me that NYFD was charging the batteries, so if we could find out further details on the type of battery/a brand on the battery or if the batteries had stickers on them for which medical supply company he uses, then we can make sure this plan will work… I just had to get a hold of that fire department. easy, right?

I had Nick’s address, so I started looking on Google Maps for the closest fire station but I was getting incorrect info. after searching unsuccessfully, I asked my friends firefighter husband, Dave LeBlanc for help finding the closest station while I looked into the cost of what Carrie, Stacy & Doug were talking about. Dave found me the station name & phone number  and I called immediately. Only to realize that the fire department’s phone lines were also down… so he suggested Twitter. Sandi Yu immediately tweeted NYFD to see if we could get further info, but we had no luck.

Of course we had a total :::facepalm::: moment when after working so hard to figure out the fire dept, I realized this was Nicks FB profile picture captioned “Visiting Ladder 1 across the street. October 10th — at Engine 7/ Ladder 1 FDNY.” LOL,  the answer to that one right hidden  in plain site, right in his profile picture caption. oops!

Fortunately, another friend of Nick’s was able to find out the type of ventilator he had. My husband happens to be an electrical engineer, so he called the manufacturer to run Carrie & Stacy’s suggestions by them. It seemed to be a feasible option. only we needed money and it was going to be a good $250+ for the set up. Sandi told HopeMob our plan and asked if they could at least try and get car batteries to his house before we got there with a power inverter.

Since it was after 5, and we hadn’t heard from FEMA in hours, Sandi Yu and I decided it was time to take things into our own hands. The car battery + inverter idea seemed ideal. We had no money for it though. But if we sat around home trying to figure out the money, we’d be losing time. Additionally, we knew supplies like this would be scarce in NYC if we sent someone else to get them there. The easiest way to get what we needed would be to bring them from out of state. So Sandi came to get me, we figured we had a good 4-5 hours of driving time to finalize a plan to power the vent, and hopefully we’d figure out the finances for it.

I emailed FEMA again, telling them we were on our way to road trip there to see if there was any sort of funding source, and I posted my paypal address on my FB status in case anyone had $5 or $10 to spare so we had some money to put toward supplies. So we got on the road… a few minutes later we got a $15 donation. followed by $10 donation. followed by a $50 donation. We were psyched. We had $75 plus the $50 total we had between the two of us. We had no clue what that could get us, but we kept driving, and people kept donating. Then we got a $300 donation. Then one of my fabric suppliers for my etsy shop sent us a donation AND reposted our need for funds, and several of her customers donated.

As Sandi drove, Carrie Lucas  called to help sort through the details of Nicks vent setup. she was able to get a hold of one of his nurses with more details, while Len Burns called and texted to give us lists of things they needed as donations increased.

By mid-Connecticut, we had about $600 in donations for Nick & Alejandra. It was midnight, so we needed a 24 hour Walmart. again, I posted to Facebook telling people my location and asking for help since the Walmart mobile page was hard to search. Within minutes, Carmen Wilson had found us the closest Walmart. YAY!

We drove 11 miles to get there and went in and grabbed carts to fill… by then it was after 1am. We had a list of needs, and ran through walmart tossing everything into carts. The employees were like o.O probably assuming we were some halloween prank seeing as the storm was technically over in CT. We were devastated when we got to the auto dept to find out that the power inverter we needed was out-of-stock. But then, Len Burns texted telling us that Sandi’s HopeMob connections had been able to locate one and an auto battery and had already delivered it!!! YEAH! because we were on the verge of hitting up truck stops all over the place in search of one. While we were shopping in Walmart we got another $150 in donations, so we were able to buy 2 more car batteries, a battery charger for them, the list from Nick and Alejandra (except flashlights), and then started getting supplies like bleach wipes, baby wipes, and hand sanitizer to help keep the germs down while they are without water. We bought Walmart out of distilled water (for Nicks vent) as well, packed up the car, and got into Lower Manhattan at 4:30am.

The whole area was out of power. It looked like a scene from a movie. no street lamps. no traffic lights. nothing. except for the occasional place with a generator, or the lights from the crews working to pump water out of the tunnels, it was pitch black. We quickly found Nick’s neighborhood.

We had our hopes up that the fire department would be willing to help carry supplies up stairs. we had 14 gallons of water, heavy car batteries, and tons of other stuff that needed to be brought up 12 flights of stairs.. Of course, since I’m in a wheelchair, I couldn’t assist her. But the Fire Department refused to help – even though they were right across the street. :( So poor Sandi had to run up 12 flights of stairs with car batteries and water to go get help from the people assisting Nick and Alejandra. The door man allowed them to put stuff downstairs until they could get friends to help carry things upstairs.

Sandi got everything situated, and when we left, Nick was successfully running his vent off a car battery – which will last approx 12 hours rather then the 3 hours the vent batteries last. We also left them with $100 cash so they have money for items needed if they have locals to go on errands – as ATM machines are also down in the area. You also have to remember, it’s the end of the month for people on Social Security – so many people with disabilities are scraping dimes together at the end of the month. :/

We got back on the road and headed back to Boston by 5:15 am. of course getting out of Manhattan was a bit tricky in the dark. We were using cellphone GPS. the signal was bad. it was dark and street signs were very difficult to read, and on top of it, GPS wanted to keep sending us down into the tunnels… totally not ideal!!! YIKES! We finally got back on the road though and reached Massachusetts by 10am – so Sandi was only 2 hours late for work!

I had contact with Nick’s respiratory company this morning & explained the set-up we have. apparently he also has a cough assist machine and an oxygen concentrator and feeding pump in need of power. We received more $$$ in donations today, so we are trying to find someone who can get some marine batteries, another power inverter and battery chargers to them to assist with powering multiple items. If you can help, please let me know ASAP!

But together, EVERYONE made this happen!
I’m amazed at the amount of teamwork that has occurred in trying to get Nick & Alejandra help. Strangers all working together to help make a plan to get supplies in to get equipment working. people donating to help fund supplies. people keeping an eye on facebook to jump in and help find info fast so we could work through barriers like minimal phone service & contact with Alejandra, people sharing any info they knew about Nick’s equipment set up so we can power it. It’s AMAZING.

I emailed FEMA this morning to let them know WE had taken care of it together. Nick has temporary a power source because dozens of people worked together through social networking to make that happen. Nick & Alejandra have a team of volunteers because while some of us focused on access to a power source, others focused on volunteer assistance. Complete strangers are helping get supplies up to him. It’s amazing.

When I asked for paypal donations, last night, I had my fingers crossed for $200-300 to try and get the basics for Nick. I didn’t expect the amazing response we got. We’re not sure how long Nick will be out of power, but from now on, Portlight Strategies is an non-profit who is stepping up to help Nick and other people with disabilities affected by Hurricane Sandy as well as other natural disasters! You can donate directly to them to help assist with medical needs of the disabled in natural disasters!

NOTE: if you are a paypal user without a paypal debit card, I HIGHLY recommend taking a few minutes to request one. You never know when you could find yourself in an emergency situation and could use one. While I was shopping in Walmart, people were sending donations, and it was on my card immediately so we could use the funds then and there to get Nick & Alejandra exactly what they needed.

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NOV 1 UPDATE: Here is more information about who we all are. Many of us didn’t even know each other until after Hurricane Sandy.  Here’s more about who we are:

About Nick Dupree -I’m a 30 year-old disability rights and long-term care reform advocate, writer, seeker, helpmate, and just a guy now trying to explore the Big City.

I grew up in and around the Spring Hill College campus in Mobile, Alabama, where I studied from Fall 1998 when I entered at age 16, until 2005. I made a major impact with my two-year campaign to change Medicaid in Alabama, dubbed “Nick’s Crusade.”

For more about me, see my Wikipedia user profile.

Since August 28, 2008, I’ve lived in New York City with my partner – first in a city rehabilitation hospital (for 378 days), and later, at home in our community.

I am looking to attain success and happiness, to complete my college degree, and to find work helping others.

Where will I end up? Who will I meet? What will I learn and what new conclusions will I draw? Stay tuned to my blog to find out.

I have returned to creating comics. For more on my comics, check out What I’ve Been Up To—Comic-ing! Bunnies in Space! (bio borrowed from his blog)


About Alejandra Ospina - Somewhere near 30, New Yorker. Blogged before it was cool, now I can’t keep up. You may have seen me around town, or around the web.

Semi-active in local activism/advocacy-oriented work, as well as online. Sometime translator, interpreter, freelancer, singer. Long ago, a performer in children’s theater. Aunt. Partner. I know stuff about stuff, or I’m good at pretending.

Some affiliations: the GimpGirl Community, the DISLABELED Film Series, the Largest Minority Radio Show, the Disability Caucus of Occupy Wall Street, and sometimes, the Peace of Heart Choir.
I was once an active MOOer. Were you?
- (bio borrowed from her blog)


About Leslie Freeman:

I’m Leslie, part of Nick & Aleja’s local, activist cripfamily. I was “first on the scene” at their house on Tuesday morning, with food & other supplies. I’ve continued to help coordinate nursing, as well as responses to attempts at forced evacuation. I bring food daily, hang out, & try to assist in care.

Meanwhile, my own home in Coney Island has been devastated by floods, & other cripfam are supplying me with shelter & nourishment.

I’m an artist and mama of two.
My kids are fortunately with their dad in Montreal.

About Crystal Evans-Pradhan - I’m Crystal from South Shore, MA (just below Boston). I’m a work-at-home mom (to Sophie who is 2), Tupperware Consultant, and I own Little Free Radical on Etsy. This is my blog – typically used for DIY ideas, though occasionally my DIY projects become a bit extreme, like this one, (or the time I tried to get 1000 Origami Cranes and ended up with 5x that). And sometimes I do crazy things, like impulsively hop in a car for a road trip to “fix” a problem with no cash, and Sandi, who I had just met a month before at a mitochondrial disease walk.

I met Alejandra back on Gimp Girls group on Myspace (back when myspace was cool), and Nick in a group for people with mitochondrial disease, though we’ve never met in person – not even when we dropped off all the supplies – since I’m in a wheelchair and couldn’t quit roll up 12 flights of stairs. Someday we WILL finally meet! :)

I’m married to Tapas, an electrical engineer who could provide further tech support once we were on the road, to make sure our shopping list for our car battery hack would work with Nicks Ventilator. :)

About Sandi Yu - Sandi has a huge heart and a passion for helping both people and animals. Sandi goes the extra mile to help because it’s the decent thing to do. Sandi was just laid off from her job as a Donor Recruitment Coordinator for the Red Cross and is looking for a new career path that lets her help people. Sandi recently organized that Leslie Cora Williams Memorial Fund.

About Carrie Lucas – Carrie Ann Lucas is the Center for Rights of Parents with Disabilities executive director and only staff attorney.

Ms. Lucas is a nationally recognized advocate for people with disabilities, was lead plaintiff in an epic seven-and-a-half year suit against Kmart that resulted in the most far-reaching accessibility class-action settlement in history before founding the Center for the Rights of Parents with Disabilities.

As a single adoptive parent to four children, Ms. Lucas is passionate for the rights of parents who have disabilities.  Ms. Lucas, who has a form of muscular dystrophy, has an intimate understanding of the unique challenges that disabled parents face.  All four of her children also have various disabilities themselves, and as a result, Ms. Lucas is an expert at navigating various systems to provide appropriate community services.

Ms. Lucas is a graduate of the University of Denver, Sturm College of Law where she was a Chancellor’s Scholar.  She also has a Masters of Divinity degree with a concentration in Justice and Peace Studies from the Iliff School of Theology in Denver.  Ms. Lucas earned her undergraduate degree from Whitworth College in Spokane, Washington.

Ms. Lucas has been a recipient of an Equal Justice Works fellowship and a Petra Foundation fellowship.  Prior to becoming the Center’s executive director, she worked at the Colorado Cross-Disability Coalition for over twelve years.

About Len Burns - (bio coming soon)

About Stacy Carlson – Stacy is a pastors wife, a homeschooling mom to Sarah located in NH, and sells Usborne children’s books.

Crystal “met” Stacy through a contact at the Muscular Dystrophy Association in 2010. Stacy is also living with neuromuscular disease, and uses a wheelchair and a ventilator.

Stacy and her husband, Doug, were able to help us out with emergency set-up suggestions for Nick’s Ventilator from their personal experience.

Liz HenryAbout Liz Henry –  I’m Liz Henry, I’m a mom and wheelchair user living in San Francisco, and work as a web producer for BlogHer. I met Aleja online through GimpGirl years ago. I got to know Nick as well; we chat often about space exploration, writing, and comics. We have mutual friends like Jen Cole and Ron Sidell. We met in person in New York finally! Both at the BlogHer conference and then over Thanksgiving while I was in town for the Committee to Protect Journalists fundraiser.

On Monday I was asking Aleja and Nick if they had anyone with them.
Akemi had come over to stay with them through the hurricane but they did not expect at all to lose power and water. I was on vacation in Mexico.
My electric mobility scooter had broken, so I had limited ability to go places and was spending a lot of time online following the news and writing to friends. From my work during and after Hurricane Katrina I know how fast situations can deteriorate and how important logistics are. Simply having people on the spot is amazingly useful. Once they are there, they can see what needs doing. I offered to reach out on my social networks to see if anyone near them might be able to come over and help out. At that point I began to realize the complexity of what support they might need and all the pressures against asking for help.

Personally, I have a ton of support and resources, yet it only takes a little change in my circumstances to unbalance the whole house of cards. When my needs change, or become more visible, other people sometimes then begin to treat me like I’ve crossed a line into complete loss of control of what happens. I didn’t want that to happen to Nick, as it so often does, and for him with life threatening consequences. And for Aleja who I love dearly I could picture how outsiders would not be able to see the level of work she does and how necessary it is. We value our independence, including our ability to plan and ask for help. But for me personally that comes with a confusing mix of pride and shame, fear and anger, for the times things don’t go as I had planned. I struggle with
it. People are very, very disrespectful and I don’t like to be dehumanized. For Nick and Aleja crossing that line could mean someone would try to force Nick to evacuate without real infrastructure in place to support them and his health care, and his breathing. Being evac-ed could kill him, but even if it didn’t, would it result in some bureaucrat or social worker deciding he should be incarcerated — forced into an institution?  Would it disrupt their lives to the point where they wouldn’t be able to come home together? When I’m casually dehumanized I lose a little dignity and I get mad. When Nick is, his life is on the line. William Peace describes very well in his blog Bad Cripple

So I worried that I was pressuring her and Nick to consent to my sending in some stranger (though a friend of a friend) into their home whether to help with personal care or just to bring them food and water or try and find a way to get power to Nick’s breathing equipment. As soon as they said it was okay, I put out a call.  It propagated quickly. Suddenly thousands of people were twittering to me or messaging me on Facebook. Three out of the thousands were able to offer practical help,
and they joined what was quickly organizing to be a team effort. I was glued to my computer talking with people, gathering information from many sources and redistributing it to others, trying to spare Alejandra’s and others’ limited cell phone batteries. Len Burns became my point of contact with Aleja. They needed sterile water, rides for their nursing/PCA staff because the subway was not running, cash for all sorts of things, drinking water, batteries for flashlights, and many more things that had to be brought up and down 12 flights of stairs.  I also started doing research on legal issues for Len Burns, to see what options existed for protecting Nick against other people’s non-helpful 911 calls on him, and discussed battery tech and power inverters with other people active in the efforts.  At some point I Facebook-friended Leslie and then Crystal and others working to help; I could see their comments on Aleja and Nick’s and Len’s posts. Now I’m happy to know them and can tell we have a lot in common — our willingness to jump into a situation and improvise, for one!
My main usefulness, probably, has been to bring attention to this. People pay attention to my thoughts on this because of my history of public speaking, and blogging; my involvement with hackerspaces, DIY technology, and activism; and because I did some useful on-the-spot work for Hurricane Katrina relief.  I also was able to donate money directly to Crystal and to Portlight. Big organizations like FEMA and the Red Cross do useful work, but usually not at this stage of chaos. A week and a half from now they’ll be in charge whether they’re effective or not, but right now it’s anarchy, so we have a chance to be the most useful with direct action.

Click Here for Part 2

In Loving Memory of Leslie Whitt Williams


“Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved”

- Mattie Stepanek  (July 17, 1990 –  June 22, 2004)

Back in August, I posted asking for help with a different type of DIY Project. A 24 year old from Ohio, Leslie (Whitt) Williams, was quickly losing her battle with mitochondrial disease. She was working through her bucket list of things she wanted to do. One of the things on her list was to fold 1000 Paper Cranes based on the Japanese Legend, only she didn’t have the energy to do it. So I posted asking for help.  And you did it. Before we knew it, over 5,000 Paper Cranes arrived!!!

Leslie’s sister, Megan Whitt-Sheehy organized a crane party to string them together, and then they hung them in Leslie’s room – EVERYWHERE!


Leslie’s sister, Megan, wrote this note to thank all of you that helped:

To My Dear, Fellow Crane Folders,

During the process of writing this note,  I came across a blog post by my friend Candice, in which she discusses hope. This has become a very important word for me over these past few months. As you know, my family is facing the ineluctable decline of my sister, Leslie. Leslie was diagnosed with Mitochondrial Disease about five years ago, and she has been fighting the illness non-stop. In her post, Candice quotes a 2008 speech by President Obama:

“Hope is not blind optimism.  It’s not ignoring the enormity of the task ahead or the roadblocks that stand in our path.  It’s not sitting on the sidelines or shirking from a fight.  Hope is that thing inside us that insists, despite all evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it.  Hope is the belief that destiny will not be written for us, but by us, by the men and women who are not content to settle for the world as it is, who have the courage to remake the world as it should be.”

Wherever you fall politically, you cannot deny the gravity of these words.

If you know me at all, you know that I do not believe in miracles. I do not pray, I do not have faith in a spiritual being. I believe that when we die, that is it. Our bodies break down, stop functioning, then decay. I personally have no evidence otherwise. I do, however, have hope, and I do not believe you need any of those other things to have hope. Even though terrible things happen, things that we cannot even begin to comprehend, I have hope that as a whole, people are truly wonderful and good. Humans do amazing things. We come together for causes bigger than ourselves. If you made a paper crane for my sister Leslie, you are one of those people. You participated in something so much bigger than yourself, and with such fervent, leonine ferocity. When I created the “1000 Paper Cranes for Leslie” event, I honestly expected just a few close friends and family members to participate. I was not entirely sure that we would ever reach one thousand cranes. Then more and more people began posting to the event. More and more cranes showed up in the mail. We passed one thousand, then two thousand, then three, four, and five thousand. With each crane that arrived, my hope in humanity grew exponentially.

I do not know about all of you, but I will be able to look back on this experience as a moment when my life truly changed for the better. Throughout this event I made new friends and reconnected with old friends. I  talked to people that I would have never met otherwise. I began the process of healing old wounds and rekindled relationships with family members. Many of you posted photos of making cranes with your families, so I hope that this experience has been just as uplifting for all of you.

As of this moment, Leslie has 5,321 cranes, made with love, from each and every one of you. Whether you folded one or one hundred, I want all of you to know that your efforts made a very ill young woman smile; you brought her joy. As my beautiful little sister drifts from this life, she can take comfort in the fact that she has loved and been loved – that she made a difference.  She has certainly made a difference to me. All of you have. You may believe you were just folding a little piece of paper, but you were doing so, so much more.

As I move forward, I have hope that the destiny we write for ourselves will be a positive one. I am not ignoring the enormity of what is to come, but bracing myself against it with the thought of a bright tomorrow.  Whenever that may be.

Thank you. I truly love every single one of you.

Peace and Love,
Megan Whitt-Sheehy

Today, at age 24, Leslie Cora Whitt Williams lost her battle with Mitochondrial Disease. 

Thank you all, for helping Leslie and her family with one of her wishes.
Please keep her mom, Allisa Whitt, her sister Megan and Leslie’s husband, Jeff in your thoughts and prayers.

15 Minute Peeps Marshmallow Ghost Pops

If you’re looking for alternatives to packaged candy for Halloween “Trick or Treat” favors, these Peeps Marshmallow pops are quick, cheap and easy to make!

 

Supplies you need:

  • PEEPS® Brand Marshmallow Candies – sold in the Halloween Candy section at most grocery stores, department stores or drug stores – Typically 2/$3 for a package of 9 ghosts
  • Retro Paper Stripey Straws – we have them available in 13 colors in our Etsy shop $3 for 12 – which would make 24 pops.
  • 3″ x 4″ Plastic treat bags  (I got them for about $3 for 100 at Michaels)
  • Ribbon or Raffia to tie them
  • Scissors (to cut the straws & ribbon)
  • Knife with a sharp tip

Start by cutting the straws in half. Your Pop Sticks will be approximately 4″ long.

With your knife, poke a hole in the bottom of each to make a hole, then insert the stick.

 

Next, put a food-safe baggie over top of each ghost.

Then cut a piece of ribbon and tie it around the bottom of the bag to secure it.

And you’re done!
Wasn’t that easy? It took me 15 minutes to make 18 of them! :)

 

DIY Halloween Ideas: 40 Minute Candy Corn Decor

Looking for quick, cheap, and easy DIY Halloween Decor ideas?

Here’s an easy project that even a non-crafty person (should) be able to do!

Supplies You Need:

  • A Glue Gun & Glue Sticks
  • Yarn in Orange, Yellow, and White
  • Scissors
  • Either Paper Mache or Styrofoam cones

Cost for the Project:
For mine, I chose to use Paper Mache – because it was cheaper at Michaels! The cones were $1.99 – $2.49 and since I had a 20% off your purchase coupon, it cost me around $5.50 for all 3 Paper Mache Cones. The styrofoam cones are easier to find and have a better size variety though.

The yarn I used is on sale this week at Michaels for 2/$5. I used:

  • Loops & Threads Impeccable in Aran for the white
  • Loops & Threads Impeccable in Bronze for the orange
  • Vanna’s Choice (Lion Brand) in Mustard for the yellow

I already had a gluegun, so my total project cost was about $13 – if you have yarn on hand, it will be much cheaper! :)

How to Make It:

First, I used my hot glue gun to glue the yarn to the bottom edge of my paper mache cone. Since I wanted it to stay well along the bottom edge (and not slip off later), I applied glue all the way around the edge and started the first row of yellow yarn.

Next, I started wrapping the yellow yarn around the cone in rows. About every 2-3 rows, I’d put a dab of glue here and there, just to hold it in place. And rather then wrapping the yarn around the cone. I used one hand to hold the yard and used the other hand to turn the cone so that way I could see where the yarn was falling.

Once I was roughly 1/3 the way up the cone with the yellow, I started winding it more randomly in layers over the rows I had just formed. Once it looked well filled in, I glued the yellow in place one final time, and started the orange section.

I did the same with the orange yarn – first forming rows with it, then going back over it randomly. Then did the same with the white. As I got close to the tip with the white, I added extra glue and made sure it was well secured… then ended the white yarn back down at the edge where it bordered the orange yarn!

I did this 2 more times for the different sized cones! It took me less then 40 minutes total  to make all 3 (including stopping to take photos!)


Love it? Pin it!

Dr. Seuss Cat in the Hat – Cake Smash – by Rebecca Ryan Photograhy

While the majority of our customers buy our products on etsy for their kids rooms or birthday parties, we often sell to photographers too! A few months back, Rebecca Ryan Photography purchased one of our Dr. Seuss Cat in the Hat Banners for a photoshoot.

 

 

We finally got to see photos of the “Cake Smash” she did for Jude’s first birthday!
Meet the Birthday Boy:

 I LOVE his shirt:

How cute is he?

The Cat in the Hat cake was designed by Sabrinas Sweet Temptations.

CAKE SMASH!!!

uh oh:

The End!

 

Love it?

See more of Rebecca Ryan’s work at rebeccaryanphoto.com or follow her on Facebook!
Follow Sabrina’s Sweet Temptations on Facebook here! 
Both are based in Beaumont, CA

And check out Little Free Radical’s Bunting Flag Banners here!
We ship worldwide! :)

Our Customer’s Vintage School-themed Party

I often spend hours working on a custom party order for a customer… when it’s done, I ship it off. I typically know the date of the party and think of the mom on that day, wondering how her party is going!

Sometimes I hear back after with a message or feedback, and occasionally, I get pictures from the party! Of course they always make my day!

This summer, a customer contacted me wanting to do a vintage schoolhouse theme. After poking around for fabric options, I found Michael Miller’s Dick and Jane collection. Of course, it was out of print, but I was able to still find a couple of fat quarters of it – enough to complete her order! :)

So I made little Caroline bunting flags & a birthday hat out of it it, and a cake bunting as well!  And when I took it to the post office to mail it, Sweet Caroline was playing on the radio at the post office!

Caroline’s mama was happy to get it, and we got to see some photos taken by Through the Looking Glass at the party! :)

I LOVE this photo with the bunting flag & the chalkboard to go with the theme.
See Caroline.
See Caroline have fun.
See Caroline turn one!

 

Cake Bunting I made!

Her Mama asked for a “girly” hat, so I found some ruffley pink ribbon to trim the hat! :)

and topped it with a pink pompom handmade {with love}

Here are the Bunting Flags in Color

and one last picture of Sweet Caroline!

Love it? See our etsy shop for our party packages! – We do custom themes! :)

Products to Benefit Mootha Lab for Mitochondrial Research + GIVEAWAY and Awareness Freebies!

It’s that time of year again! Mitochondrial Disease Awareness Week  starts tomorrow! I’ve been busy re-stocking my etsy shop with awareness products!

I’ve often been asked, Which Mitochondrial Disease organization do you support?” as though I have to “choose one.” There are multiple non-profit organizations out there which help mito patients such as MitoAction, UMDF, Muscular Dystrophy Association (MDA), Foundation for Mitochondrial Medicine,  and Cure Mito, to name a few! They all serve a different purpose in the mito community, and even various mitochondrial researchers are focused on different areas of research.

Last year, I donated a portion of the proceeds to  – MitoAction (Mitochondrial Disease Action Committee), a Boston-based non-profit whose  is to improve quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives. I ended up raising $328 last year through the sale of Little Free Radical’s awareness products!

Once again this year, I have DNA Headbands available (in 4 sizes – baby, toddler, child and adult), and we added 2 new color options for the flowers – pink or blue in addition to the green!



I also still have my Mitochondria: The Missing Piece Awareness Pin for Mitochondrial Disease:

It comes in a cellophane bag, pinned to a sage colored card with the following explanation:

FRONT: The green on this ribbon represents energy, and the puzzle piece in the center represents the mitochondria. The role of mitochondria play a key role in many diseases!

BACK: For 2 million people living with mitochondrial disease, it’s the piece to the puzzle that explains the connection between a variety of seemingly unrelated symptoms affecting multiple organs – an underlying defect in mitochondrial metabolism.

Studies have shown underlying mitochondrial dysfunction to also be a piece to the puzzle for up to 20% of individuals with autism. Mitochondrial dysfunction also plays a role in several neurodegenerative diseases including Alzheimer’s, Parkinson’s, Huntington’s, and Lou Gehrigs disease (ALS), as well as diabetes, some types of cancer, heart disease, blindness, deafness, strokes and are also involved in the aging process!

Funding mitochondrial research not only benefits people living with mitochondrial disease, but may also help with treatments and a cure for more then 50 million Americans living with diseases in which mitochondrial dysfunction is involved.

For more info on Mitochondrial Disease, visit mitoaction.org

For 2012, I decided to donate a portion of our proceeds directly to mitochondrial disease research! I’ve chosen to support Mootha Lab for Mitochondrial Medicine Research!

Dr. Vamsi Mootha is an Indian-American physician-scientist and computational biologist. He is currently a Professor of Systems Biology and of Medicine at Harvard Medical School as well as a researcher in Mitochondrial Medicine at the Department of Molecular Biology and Center for Human Genetic Research at Massachusetts General Hospital and also has his own lab, Mootha Laboratory at Broad Institute of MIT and Harvard.

His research group is a team of clinicians, computer scientists, and biologists working together on  mitochondrial research and how problems within the mitochondria can result in human disease.

Some of Dr. Mootha’s accomplishments include:

Not only is he a researcher, but he’s also an amazing advocate for patients with Mitochondrial Disease. He has been actively involved with two mitochondrial disease organizations, MitoAction and The United Mitochondrial Disease Foundation. Here he is speaking at the Massachusetts State House to legislators about Mitochondrial Disease.

Next week, during Mitochondrial Disease Awareness Week, Dr. Mootha will be in Washington DC  speaking at the Congressional Mitochondrial Disease Caucus  at a briefing entitled “Mitochondria 101 – How Something So Small is So Important to Human Life.” I think it’s fantastic that we have a researcher  in Mitochondrial Medicine, who is willing to leave the lab to spend time educating families, medical school students, and even legislators about Mitochondrial Diseases and the role mitochondria play in other human diseases too.

If you want to know more about Dr. Vamsi Mootha  and his research, here are a few more articles:

If you’re interested in directly donating to Dr. Vamsi Mootha’s research, you can donate here by clicking “Mitochondrial Disease Research – Mootha Lab.”

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What would Mitochondrial Disease Awareness Week be without a fun DIY project from Little Free Radical?

 In celebration, I thought I’d make FREE  DIY Flag Printables so you can help spread awareness in your community!

I thought these would be a fun DIY idea and an easy way to spread mitochondrial disease awareness in the workplace, at school, in your neighborhood, or even having a party to honor or remember someone in your life affected by mitochondrial disease.  Here are some ideas for use:

  • Print some out and put them on pencils for your child to pass out to classmates!
  • Or put them on pens and share them with your coworkers!
  • Bake some cupcakes and use them as cupcake toppers!
  • Get some straws (we also sell retro paper stripey straws in our etsy shop!) and put them on top for a party or the break room at work!
  • Make a cheese, veggie or fruit platter and use them as toppers!
  • Host a fundraiser to help support your favorite Mitochondrial Disease organization or researcher!
  • Or come up with an idea of your own!!!

 

I made 5 different designs – you’ll get them all on one sheet! You’ll see tiny mitochondria on the backgrounds too! :)

FRONT: 2 Million Americans are living with various forms of mitochondrial disease
BACK: Be part of the cure

FRONT: Mitochondrial Diseases = Invisible diseases
BACK: Increasing Awareness can help Increase Understanding

FRONT: Mitochondria Produce 90% of the energy your body needs to function.
BACK: Mitochondrial Failure causes cell injury which leads to cell death. As multiple organ cells die, there is organ failure.

FRONT: Mitochondria are the power plants for the human body.
BACK: Mitochondria produce energy molecules by turning food and oxygen into adinosine triphosphate

FRONT: Mitochondrial Disease Awareness Week September 16-22, 2012
BACK: Be part of the cure

To Use Them:

  • Just save the PDF file (HERE) to your computer.
  • Print them – either at home or somewhere like Office Max or Staples. I brought mine to Office Max and had them print them on glossy cardstock for 69¢/page – cheaper then using my my own ink!!!
  • Cut them out!
  • Then use double stick scotch tape to attach them to whatever – straws – pencils, food picks, & more!

Be sure to upload your photos of your printable flags in use to our facebook page!

We’d love to see your creative ideas!

 

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Lastly, how about another Awareness Week Giveaway?!?
Same as last year – 2 winners will get to choose between a Mitochondria: The Missing Piece Awareness Pin and a DNA Headband in the size of their choice!
a Rafflecopter giveaway

Be sure to check back here through awareness week for more posts & freebies!