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

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!

1000 Paper Cranes for Leslie’s Wish

Since a lot of you LOVE D.I.Y projects, I thought I’d involve my readers in a DIY project to help someone else’s wish come true:

Leslie (Whitt) Williams is a 24 year old from Ohio who is quickly losing her battle with mitochondrial disease. I asked her older sister, Megan, to tell us a bit about her:

Leslie is spirited and spunky. When we were growing up she always knew how to make me laugh. She has a fearsome temper, but she is lovable in spite of it. She isn’t afraid to tell you how it is, and she has an amazing amount of love and respect for people. All kinds of people, too.

When she was able, she did a lot of volunteer work. She loved working with an organization here in Cincy called Starfire.

She has always been interested in science, medicine specifically. She wanted to be a dietitian. Leslie is also an avid reader. She loves books and she loves movies (romance and romantic comedies). Probably one of her all time favorite activities is shopping. Her and my mom shop all the time. Shoes, bags, jewelry, dresses, you name it. She has a keen eye for fashion and good taste.

Les has been married to her husband, Jeff, for a little over a year now. They are both really into sports. Leslie loves the Cincinnati Reds – they used to go to games together whenever they could.

One of the (many) reasons mito has been so hard on Leslie is she used to be so active. She played every sport you could think of when we were growing up. She loved soccer, softball, and basketball. It’s very hard on her, not being able to move around the way she used to.

Because Leslie’s body cannot properly turn food into the energy needed for organ function due to mitochondrial disease, she now relies on IV nutrition called total parenteral nutrition  or TPN since her digestive tract has shut down. She needs a wheelchair due to muscle weakness, frequent blood transfusions, and is frequently in the hospital for prolonged periods of time. She also has a service dog, named Billy! Read more about Leslie here.
Leslie is rapidly running out of time and has a bucket list of things she wants to do before she dies. Last week, The Dream Foundation granted her wish to see Reba McEntire:

Many of the remaining things on her bucket list include traveling – something that is being coming increasingly difficult for her as her symptoms become more severe. But there is one thing on her bucket list we CAN help with:  Leslie would like to fold 1000 Paper Cranes.

There is an ancient Japanese legend that anyone who folds 1000 origami cranes will be granted a wish, or in some versions of the legend, you get eternal good luck, long life, or recovery from illness.

Of course, Mitochondrial Disease is an energy metabolism disorder, so Leslie has very limited energy and can use our help folding paper cranes!

If you have a few minutes to make a crane for Leslie, grab a square sheet of paper, fold a paper crane, and write/stick/draw/glue some inspirational words, encouragement, positive thoughts, wishes of your own, etc., onto the crane!

I offered her family to use my PO box to collect them, then I’ll be sending them all unopened envelopes to her family on August 30th, so please mail them to me by August 29th and I’ll drop your envelope in the box to her family!

Mail to me at:
Little Free Radical
ATTN: Cranes for Leslie
PO Box 850673
Braintree, MA 02184
Read more about Leslie here.

 

 

 

Here are directions for how to make an origami crane:

DIY medical supply roll

In honor of Rare Disease Day 2012, I thought I’d share a D.I.Y. post to help out people living with IV access and central lines!

I hate disorganized bags. And forgetting medical supplies when leaving the house. I often find myself digging through bags behind me in my wheelchair, trying to find a saline flush, heparin lock, alcohol pads or extra batteries.

Inspired by “crayon rolls” I thought I’d design a “med supply roll” to fill with flushes, alcohol pads & a spare battery! Just fill it up, roll it and take it with you!

Supplies:
  • 2 pieces of same fabric for outside and inside – 10″ x 22″ *
  • 1 piece of coordinating fabric for pocket – =10″ x 22″
  • 1 piece of interfacing for lining – 10″ x 22″ *
  • Disappearing ink fabric marker or pencil
  • Ribbon 24″ -36″
  • Ruler

 * measurements for 10ml flushes – if you only use 5ml flushes, 8″ x 22″ will work! 

1. Cut Fabrics as directed above.
2. Iron interfacing to “wrong side” of outside fabric following manufacturer directions.
3. Iron “pocket piece” in half longways and place the pocket against the “inside/lining piece” with rough edge lined up with bottom of lining.
4. Starting at the right, mark lines 2 inches apartfor flushes & batteries:

  • For the first one, mark it in 2.5″ instead to allow for seam allowance.
  • The final pocket on the left should be slightly bigger if you want to accommodate alcohol pads.

TIP: I did this on my ironing board, and poked pins in the right spots first to make sure  I spaced the pockets correctly before marking on the material! – then used the pins to pin it to the lining as I marked each pocket!

5. Pin pockets to lining.

6. Sew straight lines to attach pocket piece to lining & trim excess thread!
7. Take the ribbon and fold it in half. Sew the folded edge onto the center of the left side of your IV roll, with the ribbon facing the inside.

  • About Ribbon Size: If you want it to wrap twice around your roll use 36″ – otherwise 24″ will work for one time around!

8. Pin the outside/back piece on top – right sides facing each other as shown in photo #3.
9. Sew around the outside edge with 1/4″ seam – leaving a 2″opening on the right side (opposite side of the ribbon)which will be used later to flip it right side out! – NOTE: I left my opening starting just above my pocket.
10. Clip the corners diagonally to reduce “bulk” when turning it right side out. :)
11. Turn it right side out pulling through the opening from step #9

12.  Using a pointed (not sharp) object (ie: knitting needle/crochet hook, chopstick, dowel, etc), push the seams and corners out and iron it flat. Here, I used the Martha Stewart Bone Folder since its got a nice point and helped push the edges out. :)
13. Finally you top-stitch around the edges about 1/4″ in (which will also sew your hole from step #9 shut) – stitching close to the outer edge.

Fill it up with your supplies, roll it, tie the ribbon and you’re all done! :)

GIVEAWAY
And, since it’s Rare Disease Awareness Day, I’m giving away my demo medical supply roll to ONE lucky winner! 
(giveaway closed)

NOTE: This tutorial is for PERSONAL USE ONLY. If you wish to make these to sell, I ask that at least $2 from each one made goes to benefit a medical-related charity!!! - If you plan to sell these, please contact me first! Thanks!

 

My Rare Disease Story: Living with Mitochondrial Myopathy

I joined the The Global Gene Project for a BLOG HOP to help promote awareness for the upcoming Rare Disease Day on February 29th, 2012by sharing my story about living with mitochondrial myopathy. 

In the United States, a disease is considered rare if
it is believed to affect fewer than 200,000 Americans.

What does the R.A.R.E. Project stand for??
Rare Disease | Advocacy | Research | Education
30 days from now is World Rare Disease Day. Why is the number 30 significant? 30% of children with RARE disease will die by their 5th birthday.

Did You Know:

  • An estimated 350 million people are affected by rare disease worldwide.  
  • 1 in 10 Americans is affected by rare disease, that’s over 30 million people. 30 million Americans is more than the total number of people living worldwide with cancer & aids.  
  • There are more than 7,000 rare diseases with some affecting less than 100 people. 75% of rare disease affect children.
  • Almost 80% of rare disease are genetic in origin.
  • These rare conditions are chronic, life threatening and FATAL. There are NO cures for any rare disease, and only 5% of the diseases have any treatment.
  • Over 50% of Rare Diseases have no foundations, advocacy group or community support.
My Rare Disease Story
Living With Mitochondrial Myopathy
My name is Crystal and I am living with Mitochondrial Myopathy – a metabolic disease of the muscle included in the umbrella of over 40 rare neuromuscular diseases covered by the Muscular Dystrophy Association!

Mitochondrial Disease means that my body cannot properly turn food and oxygen into Adenosine triphosphate (ATP) – the energy molecule necessary to sustain life. Because the disease is in my cells, it affects multiple organs causing secondary diseases.

Although my symptoms started in early childhood, it took doctors over 20 years for a diagnosis, since Mitochondrial Disease is considered RARE.

History of Mitochondrial Disease
Mitochondrial disease was first described in a patient in Stockholm the 1960s, but it wasn’t until 1988 that the first molecular identification of cause of mitochondrial diseases occurred. More patients with various forms of mitochondrial disease were diagnosed through muscle biopsies in the 80’s and 90s, but it wasn’t until the last decade that many doctors began to understand how to identify patients affected by mitochondrial disease.

Additionally, after the completion of the Human Genome Project in 2003, several of the disease-causing genes in both the nuclear DNA genome (nDNA) and the mitochondrial DNA (or mtDNA) genome were identified, and genetic tests have become available to test for them – making diagnosis of mitochondrial disease easier. Additionally, several forms of Mitochondrial Disease can be tested for through newborn screening!

Though diagnostics are improving, there are still very few doctors that know how to recognize and correctly diagnose it. In my case, I was actually correctly diagnosed in 2005, when muscle biopsied for a misdiagnosis of polymyositis (another rare neuromuscular disease). Mitochondrial Disease had never been ‘suspected’ in me, so when my biopsy was sent to a lab they realized it had been mitochondrial myopathy all along, not an auto-immune disease as I had been mis-diagnosed with several times.

How Mitochondria Work:
Inside of nearly every cell in your body are tiny organelles called “mitochondria.” These organelles act as “cellular power plants” because they produce more then 90% of your body’s cellular energy. When you eat, mitochondria convert the food into its energy form called adenosine triphosphate or ATP through a process called cellular respiration which occurs in the electron transport chain.  The energy (or ATP) is necessary to sustain life as they provide cellular energy for organ function.

What Happens When They Don’t Work?
Research shows that if the mitochondria malfunction, it can lead to a number of diseases depending on which cells in the body are affected. Mitochondrial dysfunction plays a role in several neurodegenerative diseases including Alzheimers, Parkinsons, Huntingtons, and Lou Gehrigs disease (ALS – Amyotrophic lateral sclerosis), and studies have shown mitochondrial dysfunction to also be a piece to the puzzle for more common conditions including diabetes, certain cancers, heart disease, blindness, deafness, kidney & liver disease, stroke,  and autism. Mitochondria also play a role in the aging process!

In addition, as many as 2 million American’s suffer from mitochondrial diseases – a group of diseases resulting from gene mutations in the mitochondrial and/or nuclear DNA. When these mutations occur, they can also lead to malfunction along the electron transport chain resulting in cell injury due to insufficient energy from their cellular powerplant (the mitochondria). Cell injury can lead to cell death, and when multiple cells die in one organ, that organ won’t have sufficient energy for functioning. As this happens in multiple organs as the disease progresses, the individual can portray a wide variety of symptoms.

For me, mitochondrial disease has effected my heart, neurological system, muscles & lungs the most. These organs require the most energy to function, so with insufficent energy it has caused symptoms such as seizures, stroke-like episodes, dysfunction of the autonomic nervous system (which regulates things such as heart rate, blood pressure, body temperature), and  muscle breakdown (myopathy) resulting in me needing to use a wheelchair for mobility and a ventilator due to lung muscle weakness causing pulmonary failure. I also use IV infusions to help stabilize the autonomic nervous system and increase my heart rate & blood pressure.

Another person with mitochondrial disease may present completely different. Some individuals may have less trouble walking and more trouble with issues like learning disabilities, autism, cognitive problems or developmental delays. Some may become deaf or blind while others rely on feeding tubes for nutrition. No two individuals (even within the same family) will present the same way. Because of this, it makes it harder for many doctors to recognize the signs.

Did You Know: There are more children in the US affected with Mitochondrial Disease then all forms of childhood cancers combined! Mitochondrial Disease may be considered a “rare disease,” but it’s far more common then you’d think! At least 1 in 4,000 people in the United States are living with Mitochondrial Disease! Who are some of these people? Here are a few familiar faces:

Actress Chandra Wilson (Dr. Miranda Bailey from Grey’s Anatomy)‘s daughter, Serena is living with Cyclic Vomiting Syndrome (CVC) – a Mitochondrial Disorder. She shared her daughters story  on The Doctor last year:

Baseball Player, Rocco Baldelli put mitochondrial disease in the news in 2008 when he was diagnosed with Mitochondrial Disease. He was later diagnosed with a channelopathy, but his story inspired many young children also affected by Mitochondrial Disease. During his career, he played for both the Tampa Rays & the Boston Red Sox, but after numerous injuries, his health forced him to retire at age 29.

http://c.brightcove.com/services/viewer/federated_f9?isVid=1
“I physically don’t feel like I should be playing anymore.”Rocco Baldelli 

Charles Darwin (father of evolution) spent his life battling a chronic medical condition which multiple researchers believe to be a maternally inherited (mtDNA) Mitochondrial Disorder. Here are some articles about it:

Mattie Stepanek (MDA National Goodwill Ambassador 2002-2004) also lived with Dysautonomic Mitochondrial Myopathy and died shortly before his 14th birthday.  Since Mitochondrial Disease is genetic, Mattie’s entire family was affected by the disease. His mother, Jeni, lost all 4 of her children to the disease. Here’s his story as told by his mother:

They’re not going to find a cure to this disease, in my lifetime. 
But like Mattie, I believe that finding a cure to any of the diseases is not about a specific lifetime, it’s about being a part of the effort because it’s somebody’s lifetime. 
          I am a part of the cure whether that cure is found in 10 years or 100 years.
- Jeni Stepanek