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!

My Top 10 Tupperware Products for People with Disabilities

 

It was the first week of January when  a friend of mine Facebook messaged me asking me if I wanted to hold an online Tupperware party.  I figured, why not… I went to Tupperware’s website, poked around while I was chatting with her, then asked if I could hold a “real” Tupperware party.

You see, I’d never actually been to one. My mother held them every few months when I was a kid – so she could earn all the hostess gifts. She’d invite all her friends from church over, and send my sister and I to bed early and we’d try to eavesdrop from the top of the stairs to see why everyone was laughing and what it was we were missing. I couldn’t figure out what was so funny about looking at pieces of plastic.

We set a date  and I made a Facebook event. I invited my friends and my sister immediately replied something to the effect of: “I already claimed moms Tupperware when she dies, so you’re going to have to buy your own!”  I wasn’t THAT desperate for Tupperware, I just thought I’d throw a party for fun!

I just pictured Tupperware as modular mates  and food storage containers so I only had intentions of buying sippy cups for my daughter since I know I have a hard time dealing with getting lids on containers due to neuromuscular disease & hand muscle weakness.

But as I watched the consultants set up for the party, I was surprised to see that Tupperware was more then just plastic bowls! As soon as they started demoing some of them, I went from planning to buy “just sippy cups” to realizing how many of the products would dramatically improve my ability to prepare food despite my disability. And by the end of my party, I decided to become a Tupperware consultant was because I realized how much some of these products could improve the lives of others with disabilities!
 

My Top 10 List Tupperware Products for People With Disabilities

NOTE: I’m not a medical professional, just a person living with neuromuscular disease and a spinal cord injury (incomplete, C2) who has tried these first-hand to see what Tupperware products work for me and which don’t. So, whether you have a disability yourself, or are trying to find a gift for someone who is, these are the products I’d most recommend!

 

Food Prep Tools

 

1. The Smooth Chopper 

Price: On Sale for $35 this month – ($59 Regularly)
http://www.my.Tupperware.com/CrystalEvans

What it does: It can easily chop, blend, whisk and emulsify food  – just by pulling a string! You can chop fruit, veggies, or other foods with the blades attachment, or use the whisk attachment to make smoothies, puree food, make baby food,  creamy beverages or dressings, savory sauces and more!

It’s also compact – great for on the go since it doesn’t require electric! It also comes with a virtually airtight, liquid-tight seal for convenient fridge storage – so you can store your food in the container you prepared it in!

Here’s a video of how it works:

How it helps me: I have a hard time with both gripping a knife while pushing down to cut veggies, so chopping food is tricky. I do have the ability to pull the string to let it chop! It’s also easier for me to use then a blender from  a wheelchair! It’s less awkward since I can use it on my lap, rather then trying to reach across a counter to a plugged in appliance. It’s smaller and easier to handle!
People I think the Smooth Chopper is ideal for: Anyone, really! But it would especially make food prep easy for:

  • A wheelchair user – rather then using electric appliances which may be awkward to reach/use at a kitchen counter
  • Someone with difficulty with fine motor skills  such as individuals with  spinal cord injury (depending on their level), people with neurological or neuromuscular diseases, etc – if they have the ability to get the handle between their fingers & some strength to pull the string.
  • It may also be useful for an elderly person or someone with arthritis (depending on how it affects their hands)
  • It’s awesome if you have a baby with a strict diet or food allergies! You can make baby food from scratch AND on the go
  • Someone who needs pureed food – this works on the go!

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2.  Chop ‘N Prep™ Chef  
Price: On Sale for $29 this month – ($45 Regularly)

http://www.my.Tupperware.com/CrystalEvans

What it does: Essentially it’s a smaller version of the Smooth Chopper – without the whisk attachment. The Smooth Chopper has 3 cup/700 mL capacity, the Chop ‘N Prep™ Chef has 1¼-cup/300 mL capacity – It’s much smaller and more portable!

How it helps me: If I’m making something where multiple things need to be cut up, I often use this along with the Smooth Chopper! or if I only need a small amount of something – say parsley – it’s easier to use the smaller container then the Smooth Chopper!

People I think the Chop ‘N Prep™ Chef is ideal for:

  • Same list as the Smooth Chopper (see above), except for the people using it for baby food or puree since this one is smaller without the whisk.

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3. Quick Chef Pro

Price: $69

http://www.my.Tupperware.com/CrystalEvans

What it does: The Quick Chef Pro is a  non-electric food processor! It has blades that can can chop food, it has a paddle whisk for mixing and whisking ; a funnel with measurements for making dressings; a small basket to dry fresh herbs or to use as a salad spinner for small salads; an ergonomic cover with   handle; and an airtight and liquid-tight seal for storing.

See it in use here:

How it helps me: I love this because it’s more portable then a large electric food processor! Being in a wheelchair, I have a hard time reaching the counters, let alone inside of a tall kitchen appliance! This has no cord, so I often just put it on the dining room table since it’s lower then my kitchen counters so I can prepare food!

People I think the Quick Chef Pro is ideal for:

  • Wheelchair Users – as long as you have good arm strength to turn the handle! NOTE –  Some people with disabilities affecting their arm strength, or that experience shortness of breath from exertion may find it a bit more difficult to use then the Smooth Chopper.
  • Of course any able-bodied person would love it too!

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4. Can Opener

Price: $35

http://www.my.Tupperware.com/CrystalEvans

What it does: It opens a can by cutting along the outside of the can, leaving a smooth edge – rather then cutting around the inside of the lid leaving a sharp edge!

Here’s a video of it in use:

How it helps me: I ordered this product the week I was put on Coumadin (blood thinners) to avoid cutting myself on can lids! 8 months later, I’ve yet to see a sharp spot on any can I’ve opened! Plus, it’s easy to turn and doesn’t require a lot of strength unlike some can openers I’ve tried!

People I think the Can Opener is ideal for:

  • Anyone on Blood Thinners! – no need to worry about the never-ending bleeding cuts using this can opener! It would be the perfect  stocking stuffer for the parent or grandparent on Coumadin who already has everything!

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Food Storage Containers

5. Counterscaping Liquid Container Set

Price: $39

http://www.my.Tupperware.com/CrystalEvans

What it does: Instead of a pile of oils & seasonings on your counter, put them in these containers for an organized countertop!

The caps are liquid-tight and best of all, they are easy to open! If you have difficulty screwing/unscrewing lids on your oils, marinades, vinegar and other liquid cooking essentials, all you have to do is press down on the lever and it opens, but locks shut when you’re done! They look fab too!

Set includes one each of:

  • ¾-cup/200 mL Small
  • 2½-cup/600 mL Medium
  • 4¼-cup/1 L Large

See the product video:

How it helps me: I have a couple sets of the Counterscaping Liquid Containers as well as 2 sets of the Counterscaping Dry Seasoning Container Set. That way, as a wheelchair user, I have everything I frequently use in reach when I’m cooking so I don’t have to try and get items from high shelves (glass olive oil jars aren’t ideal object to reach with a grabber)! And at the same time, it keeps my countertops from looking like a pile of clutter!

People I think the Counterscaping Liquid Container Set is ideal for:

  • People with fine motor problems who have trouble getting screw lids on and off.
  • People in wheelchairs – so everything is in reach on the counter!
  • …And of course, anyone with OCD :)

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6. Fridge Stackables Set

Price: $19

http://www.my.Tupperware.com/CrystalEvans

What it does: This is a 3-layer container that you can use to store cheese, sandwich meats, tomato slices, hot dogs & more!!!

How it helps me: I have a hard time with trying to get lids for a lot of containers on. These “snap” together so they are easy to put together and take off… I find myself using them to store things in my fridge other then just meats & cheese!

Additionally, I have a hard time with ziplock bags (unless they have that slider to lock them), so when I get foods from the deli, I’ve had them go bad quickly because I couldn’t re-seal the container. This makes it easy! This $19 purchase has helped me not waste a lot of food! :)

People I think the Fridge Stackables are ideal for:

  • Anyone who has trouble re-sealing ziplock bags from the deli!
  • Anyone looking to store food in a small container that has difficulty with regular lids!

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7. Vent ‘n Serve

Prices:

http://www.my.Tupperware.com/CrystalEvans

What it does: These containers can be used in the fridge, freezer and microwave! Their unique venting system allows steam to escape while reheating food in the microwave!

How it helps me: Vent ‘n Serve lids are super easy to get on/off unlike many of Tupperware’s food storage products. I also love them because the lids are the same size for their sets and instead the various sizes are deeper – so I’m not sitting there trying to find the “right” lid every time! And, it reheats my Chinese take-out perfectly every time! yeah!!!

People I think the Vent ‘n Serve containers are ideal for:

  • Anyone who has trouble using the lids on other Tupperware containers. These will be easier for you! :)
  • Anyone who relies on the microwave for meal prep!

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Microwave Cooking

The last 3 items are from Tupperware’s line of Microwave Cooking. I spent most of my 20s living in elderly housing (yes, seriously – since that’s where the wheelchair accessible apartments were!) and I can’t tell you how many times a month the fire department responded to fire alarms for elderly or disabled people forgetting food on the stove. We actually had 2 fires in my building as a result.

I also had uncontrolled seizures for 5 years following a traumatic brain injury from a car accident as a teenager, and during that time, I wasn’t allowed to use my own stove or oven unsupervised. My food options were very limited. I wished I knew about some of these products years sooner!

 

8. Microwave Pasta Maker

Price: $29

http://www.my.Tupperware.com/CrystalEvans

What it does: You can prepare perfect pasta in minutes in the microwave with this product! It has a built-in strainer so you can cook, strain & serve out of the same container! It will save you from all the extra dishes as well! :)

Watch how it works here:

9. Smart Steamer

Price: $139

http://www.my.Tupperware.com/CrystalEvans

What it does:  Makes the perfect meal, in the microwave! Yes, seriously! I’ve cooked chicken, salmon, veggies & more in mine – meals in 10 minutes!

From  Smartsteamer.com:

Breakthrough Technology:
The remarkable Tupperware® SmartSteamer blocks microwaves from cooking foods by directing them to the Water Tray (4), causing the water to boil and the steam to rise for perfectly steamed foods.

The two-tiered system allows for cooking one or two foods at once. Place one food in the Base (3) and the other in the Colander (2) then stack, cover (1) and steam.

Beautiful Design
Elegant design and color make the Tupperware® SmartSteamer suitable for serving directly on the table. Simply discard any remaining water from the Water Tray (4), place the Steamer Base (3) back on the Water Tray (4) and place the Colander (2) on the reversed Cover (1). Always place them on a trivet to protect table surface.
Instead of the microwave heat cooking the food (and often drying it out), the Smart Steamer is designed for the microwave to boil the water located in the bottom layer. The water then steams the food!
See it in action:

Visit Smartsteamer.com for more details!

NOTE: There are also add-on’s to this product – the 9-Pc. Accessory Set for Tupperware® SmartSteamer  ($35) and the Smart Meals Recipe Book ($15)! It’s an expensive investment, but is ideal if you want to host a Tupperware Party – get  it as a 1/2 price item, or use your hostess credits towards it!

People I think the Microwave Pasta Maker & Smart Steamer are ideal for:

  • Anyone with Memory problems including Alzheimer’s, Dementia, Stroke, Brain Injury- If they are allowed to do microwave cooking!
  • Also great for people with Seizure Disorders, Narcolepsy, or on medications which may cause drowsiness preventing them from the safe use of a stove!
  • It’s also a must have for any mom! Easy meal without having to wonder what your kids are up to while you’re busy cooking! :)
  • Also great for college students cooking in a dorm!

If you love these, also check out Tupperware Microwave Rice Maker & Breakfast Maker!

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10: Soup Mug

Price:

http://www.my.Tupperware.com/CrystalEvans

What it does: Soup mugs are awesome for soups, oatmeal & other hot cereals, ramen noodles & sauces! The CrystalWave® mug has a vent that flips up while cooking and the Vent ‘N Serve® has it’s own vented silicone valve.

How it helps me: In a wheelchair, it’s ALL about the handle!!! I use my Vent ‘N Serve soup mug (that I got FREE for hosting my first party!!!) all the time. Instead of trying to roll around with a hot bowl in my hand, or worrying about spills, while I roll around with hot liquid, I leave the cover on, carry it by the handle and roll to the table easily! I don’t know how I lived without it!

People I think the Soup mugs are ideal for:

  • Wheelchair users – easiest way to transport hot liquids!!!
  • College students in a dorm!
  • Anyone else, literally!!!

And, since soup mugs really ARE ideal for anyone, I’m giving a CrystalWave® Soup Mug away!!! :)

Enter via Rafflecopter:
a Rafflecopter giveaway

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If you like what you see, host a Tupperware party to earn it FREE!

If you’re in the Boston-area, I can do a party at your home or workplace! If you’re not local, I can send you catalogs to do a catalog party. 

Or you can set up an online party in just 5 minutes! Here’s how:

  1. Go to my Tupperware webpage: http://www.my.Tupperware.com/CrystalEvans
  2. Click on “PARTY INSPIRATION CENTER” at the top.
  3. Go down to  “HOST AN ONLINE PARTY!” and click “About Online Parties”
  4. Next, click “Open my Online Party” and follow the instructions to set up your party!
  5. Once it’s set up, be sure to E-mail your friends (or share your link to facebook)

If your online party sales go above $200, you earn  10% of Online Party Sales as an eGift Certificate to purchase Tupperware® products at the Tupperware Shop.

Unique, Handcrafted Mobiles by Jenna Bee’s Paper Creations

Today, I’m featuring Jenna of Jenna Bee’s Paper Creations on Etsy!

Jenna is the original designer of these awesome mobiles and was featured in Pregnancy & Newborn Magazines Fall 2011 Buyers Guide, as well as LIL Sugar, Awakened Aesthetic, and Modern Handmade Child.


1. Tell us about yourself:
I like long walks on the beach and holding hands while watching the sunset. Long stemmed roses are beautiful and nothing beats a glass of merlot after a long day of walking my rescue dog and being a role model for orphaned children in my community.

Just kidding.

I am the mother of one little girl who keeps me very busy. I like listening to music and playing sports in my free time. I also write, but that’s a secret.

2. Tell us about your company, why you started your company.
When I was pregnant, I wanted to buy as much handmade stuff as possible for my daughter’s nursery, however, I couldn’t find the exact crib mobile that I was envisioning.  So I decided to create one myself.  The resulting design is what you see on my website. I enjoyed making the mobiles so much that I decided to do it as a hobby and see if people would buy them so that I could continue making them.  As the demand for them increased, it slowly transformed from a hobby into an actual profitable job.

3. Tell us about the products you make and your future plans for your company:
I make baby mobiles in custom and standard sizes.  The mobile has a rather modern look to it and can come in any color under the sun.  My plans for 2012 are that I will be introducing a new design within the next month that will be a very different shape from what I’ve been doing.  And I’m pretty excited about it.


4. What is your favorite product in your shop and why?
Currently my favorite product in the shop is the Somewhere over the Rainbow mobile in size large.  I love the way the colors fade into each other so well in that mobile.  And it makes SUCH a statement in a nursery.  I also really like Tropical and Splash which are two new designs for summer.

 

5. Tell us about how you manage your time as a work-at-home mom.
I don’t know how I manage my time. I don’t think I do “manage” time. Does any work-from-home mom manage her time? I’m pretty sure you just learn to roll with the punches and do as much as you can, when you can. Typically I do housework and take care of my daughter during the day. It’s usually not until after she goes to bed that I’m able to get much work in.  I spend many nights up until 2am or 3am trying to get everything done.

6. What inspires you?
Nature.  Almost all of my designs are inspired and named after something I saw in nature.


7. When you’re not creating products for your shop, what are your hobbies?
My hobbies are painting, photography, softball, volleyball, reading, and writing.


GIVEAWAY:
Jenna is offering one lucky reader a free regular sized mobile from  her shop! Enter via Rafflecopter!

a Rafflecopter giveaway

GIVEAWAY: vinyl wall art

We have another great giveaway for you today from Vinyl Wall Art!

I’ve shared several times here recently about using vinyl decals with DIY projects including bookshelves & prant boxes.  I totally ♥ decals!  They are SO easy to use and far less time consuming then having to paint wall murals or detail work on smaller DIY projects! You can have a great piece of art in just minutes!

Remember our IKEA PRÄNT box hack? I used these awesome birch tree decals that Vinyl Wall Art was nice enough to custom-resize & inverse for me:

I love their decals – I first found them when I was pregnant and drooling over thousands of decal listings on Etsy. I wanted a tree for Sophie. I looked at dozens, but kept going back to Vinyl Wall Art’s tree… And of course when I went to order their tree, I saw the birds! So I ordered the tree & the birds for Sophie’s wall.

My husband painted her nursery on Mothers Day 2010 for me, and then after 2 weeks (recommended time for paint to dry before applying decals) he put them up for me:

Sophie loves her room, and one of her first words was “owl” (pronounced “all) – she’d stand in the crib looking up at her owl in the morning. She likes her birds along her crib rail too. :)

I loved Vinyl Wall Art’s Forest Decal Kit but didn’t have a good wall in her room to use them, so I figured when we buy a house, I’d put them in her new room!

Then one day, my college roommate, who is adopting a baby from Korea,  posted photos of her daughters room which have the tree decals I love, so I asked her if I can post some pictures of Zoey’s room!

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Vinyl Wall Art has a ton of other awesome decals on their website as well as available through etsy. And they were kind enough to offer to sponsor a giveaway for our readers for $25 gift certificates for 2 lucky winners so you can try their projects for your own home or DIY projects!

Wall Vinyl Art will provide a “voucher” that is as good as a PayPal credit – you can use it to pay for the item as well as shipping cost – what ever you want. It will maintain a positive balance until used, so you don’t have to use it all at once if you want to buy a few small decals at a time!

Enter via Rafflecopter.
Giveaway is available worldwide!

  GIVEAWAY CLOSED

organic elephant giveaway – in celebration of Luca’s arrival

As a member of The Artisan Group, I had the opportunity to include one of my elephant softies  in a gift bag for Hilary Duff & her baby boy back in November made with organic fabric sponsored by
Birch Fabrics  from their Mod Basics collection and filled {with love} and bamboo-blend fiberfil!

This week, Hilary sent out this message on Twitter:

“Welcome to the world, Luca Cruz Comrie!  
Tuesday evening, we became proud parents of a healthy 7 pound, 6 ounce beautiful boy.”
So, in celebration of Luca’s arrival, we thought we’d give away an elephant softie identical to the one we gifted Hilary & Luca with in November! He measures 6×9″ and is the perfect pal for your favorite kid!

Enter our giveaway below for a chance to win the elephant above! Giveaway ends at 11:59pm April 1, 2012

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a Rafflecopter giveaway<a href=”http://rafl.es/enable-js”>You need javascript enabled to see this giveaway</a>.

These elephants are available to purchase for $20 at Little Free Radical on Etsy! 
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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

GIVEAWAY: Holiday B. toys shareaway

It seems that every festive occasion in our family involves B. toys! At my baby shower, Sophie got Elemenosqueeze, Dr. Doctor, and Zany Zoo – before she was even born! Poppitoppy joined our home soon after and immediately became one of her favorite toys!
Last Christmas at our house was a very B. toys Christmas. Under our tree sat an Alphaberry, an orange Hellophone, red Funkeys, Snug Bugs, Fish & Splish, and Whacky Ball.  And of course we’ve gotten a few new B. toys in the past year including a Critter Clinic for her 1st birthday,  Sugar Chute instead of an Easter Basket, and for random special days we got Hugs :) Links, Times Square, A-Maze Loopty Loo, H2 Woah! 
It’s so hard to pick our VERY favorite toy! but Poppitoppy is right at the top of our list!!! – right up there, to the point that Sophie dressed as Poppitoppy for Halloween!
Of course when a company makes a very awesome toy, sometimes you end up with duplicates – or in our case triplcates! Yes, we managed to receive 3 Poppitoppy toys! While Sophie was excited to see Poppitoppy #2 – and be able to carry one in each hand and press them at the very same time we decided to save the extras to SHARE with people who didn’t have their very own Poppitoppy! :)

Sharing Poppitoppy #2 with our clinic: After a visit to our “Family Practice Clinic” when my bored one-year-old found a drawer of plastic speculums that she felt made perfect drum sticks for the metal biohazard trashcan  (the result of what happens since the clinic didn’t have Parum Pum Pum for making music), we decided Poppitoppy #2 looked like an awesome clinic toy to entertain kids while waiting for exams or to distract from the pain of getting a shot. There are no little pieces that can get lost, and it’s easy to clean between small patients!

Sharing Poppitoppy #3 (and #4) with YOU!!!: Of course we still have one more Poppitoppy toy we still need to share! When we told our friends at B. toys that we’d love to share our extra toy, they loved the idea – to the point that they wanted to share a Poppitoppy too! So here is what we are going to do:

One lucky reader will have a chance to win not just one, but TWO Poppitoppy’s
  • One is for your favorite child (or your favorite kids to SHARE)
  • The other is for your favorite charity!!
How To Enter:
You can enter for your chance to win by entering this giveaway via Rafflecopter. You must open the post for the giveaway widget to appear (click on the post title). Rafflecopter makes entering giveaways super quick and easy – and allows for a random winner to be easily chosen!
  • Mandatory Entry: leave us a comment below telling us what your favorite children’s charity is, and why that charity is important to you! 
  • Extra Optional Entry (to increase your odds) in a separate comment: Tell us about your own favorite toy in childhood! Why was it special to you?
  • Be sure to check off each of these tasks as complete for rafflecopter to ‘recognize’ your entry!

    DETAILS:

  • ONE winner will be chosen   – plus a Poppitoppy for your favorite charity!  
  • Live outside of the US? no problem! We are happy to SHARE with readers all over the planet!!!
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Oh, and while you wait for the share-away to end, be sure to stop by the B. Quotes and read some words of wisdom from kids – or share some of your own child’s quotes!

Don’t forget to come back on  January 1, 2012 to see who we are sharing these great products with- winner has 48 hours to claim their prize! –
and we have a few more upcoming giveaways so “follow us” to stay tuned for future share-aways & giveaways!







Links You Might Love:
B. toys: facebook | twitterblog website
Little Free Radical: facebook | twitterblog etsywebsite

announcing the winners of our B. toys shareaway

Our B. toys shareaway ended Sunday night, so it’s time to announce the WINNERS:
My mini-assistant was the one “sharing” her duplicate toys so I figured instead of letting random.org pick, why not let her pick who she was sharing with?!? So I printed all the comment entries on my blog, and realized that B. toys Fish & Splish was the perfect “container” for drawing names from:

 

Winners of the Hellophone:
Neelam Shroff
(India)

Neelam’s Charity Choice: Make-a-Wish Foundation
“I would like to nominate Make a Wish Foundation. Both my children have mitochondrial disorder (mitochondria is the organelle that produces energy in our body and in mitochondrial disorder the body doesnot produce enough energy to sustain life functons, and it is usually progressive and fatal in nature). Though my kids are on the milder spectrum, I have many friends who have kids who are very sick and these innocent ones are fighting continuously for their life. Make a Wish Foundation has been great to bring a smile and cheer back in their lives. They have granted wishes as wide ranging as that of Disney trips, cruises, meeting a celebrity hero, doing a therapy room etc and they are deserving of this giveaway.”
Winners of the FunKeys:
Kristin G.
(Louisiana)
 
Kristin’s Charity Choice: March of Dimes
“My favorite children’s charity is March of Dimes. I always get the mailers and take time to read the kids stories. We give what we can(plus the little mailing address labels they send are super cute ;) I feel like I am really blessed to have a healthy baby and the best way I can be thankful for that is to help out other families who have sick babies. Great giveaway!”

So Kristin & Neelam – I’ll get your toys shipped to you this week!

Neelam – let me know if you have a chapter preference for Make-A-Wish Foundation so I can relay the info to B. toys! Would you like to share them with  India’s Make-A-Wish chapter or one of the US chapters?

Kristin – would you like B.toys to send the phone to the Louisana Chapter for March of Dimes?

Enjoy the toys!!! :)
Watch our blog for more giveaways & shareaways!
We have a Diwali one starting tomorrow, and another B. toys share-away next month!

 

GIVEAWAY: our favorite babywearing toys

So, I began International Babywearing Week with a post about my favorite carriers for babywearing as a parent in a wheelchair, so I thought I’d end the week sharing about my 5 favorite TOYS for babywearing- and do a share-away with 2 of them!!! [see the bottom of this post for your chance to enter]
#1: Haba Pacifier Clips & Chains:  
For Newborn + 
I must say that pacifier clips & chains have been a huge lifesaver for me! There is nothing like having the baby all cozy or sleeping in the carrier, then dropping their toy or pacifier and trying to reach down to get it, right?
So I found these fantastic pacifier clips & chains when I was pregnant and had to get a few! Haba products always have cheerful colors and I love that they are made of wood instead of plastic.
We briefly did a pacifier so I used it for that early on, before using it to attach toys to my ring sling & beco carriers. It was fantastic to be able to bring a toy along everywhere without worrying we’d drop it and lose it somewhere along the way. Yes, I’m the type of person that always get a little sad for a kid when I see a lost toy out on a sidewalk, knowing it’s little owner might be missing it. :'(
 I’ve had a hard time finding these toys locally (in Boston) but I’ve found these pacifier chains & clips online at stores such as Maukilo, Oompa, Moolka, and PadLilly costing about $4 for the clips & $14-17 for the pacifier chains. Check out those shops to see the awesome product variety they carry! You might have a really hard time choosing just one(which is why we have 2 chains & 2 clips at our home)!The clips are awesome if you have a toy with a small lanyard so you can clip it to your carrier. Or you can always  tie a small ribbon from the clip to a toy. :)

 

#2: Haba Rattles & Clutching Toys
For 6+ Months
Around 4 months, Sophie started getting ‘bored’ in the carrier when we were out, so I got her these two toys to take along – Corella Clutching Toy & Nana Clutching Toy. We were working with Early Intervention for gross & fine motor issues (likely the result of a perinatal stroke) so these toys were perfect in helping her learn to use her fingers. The Corella toy’s wooden segments are attached via an elastic ring so the babu can turn them and make different shape creations. The Nana has a rotating flower petal and 2 sections strung together on elastic. Both are made of beech wood with a non-toxic finish.
We have several more Haba Rattles & Clutching Toys so I often rotate which we bring out of the house with us since they can pop on the clips easily. Haba has a wide variety of similar toys – here are a few more – several of which could easily tag along on a babywearing day out!

 

Larum Rattle, $14; Lirum Rattle, $14; Color Snake Clutching Toy, $12;
Flower Trio Clutching Toy, $14; Jungle Caboodle Clutching Toy, $14;
Klick-Klack Rattle, $8; Trioli Clutching Toy, $8; Kastagnetta Rattle, $12;
Jingle Train Clutching Toy, $14; Magica Clutching Toy, $12
#3: FunKeys from B. toys: 
For 6+ Months
Another favorite toy – from another of our favorite toy companies – are the FunKeys from B. toys! They were one of the Christmas presents I bought for Sophie’s First Christmas!
They are a fantastic little set of keys with 4 sounds & a push button flashlight! They are super durable – made of safe stainless steel! B. toys has such an awesome website that you can go check out the sounds right on their page that the keys make! How cool is that? (sometimes playing with their website is as fun as playing with their toys!)

The lanyard attached to the “key chain” makes it super easy to attach to many babywearing carriers! Sophie has recently figured out the light – to look down inside the carrier (searching for lost cheerios on-the-go?)
FunKeys retail for about $9 at Target. A must-have for any babywearer and a great stocking stuffer idea for kids under 3! Or you could put it under the tree since it’s a self-wrapping gift! - How cool is that?

#4: Hellophone from B. toys: 
18+ Months 

As Sophie has gotten older (she’s now 15 months), I’ve realized that to keep her entertained all day I need more then just 1 toy on the go…  so, lately we’ve been wandering around Boston with the FunKey’s on the right side of the carrier, and the Hellophone on the left. I’ll explain all the entertaining features:

Like the FunKeys, this toy also makes some awesome noises – which you can try out on B. toys website! Of course it’s not as cool as the iPhone since we can’t play the music video for Jai Ho (which my daughter thinks is the best song ever), BUT you can record messages on it so your child can hear your voice (or part of a song!).  How awesome is that?

If you close the phone for a few minutes, it will randomly ring – then when you open it it either plays your recorded message, a dial tone or a busy signal (but don’t worry – if you don’t answer it the first time, it will stay quiet – this isn’t one of those toys that will wake you up at 3am)! Of course this feature is always a conversation starter on the MBTA when people hear a phone ring and a 1-year-old “answers” the toy phone. :)

For babywearing, like the FunKeys, this phone has a lanyard too – making it easy to attach to a carrier! And, in typical B.toys style, Hellophone comes in all sorts of awesome colors!  You can find it at Target for about $8-9!

#5: Alphaberry from B. Toys: 
18+ Months 
As I said, we are big B. toys fans! They are affordable toys, come in great colors and are from a company who wants to B. nice to the planet! And for me, they are also happen to be locally-based! :)

So if you were impressed with the FunKeys & Hellophone, you’ll really be impressed with the Alphaberry! I don’t think there could be a cooler way to learn your ABCs then pressing the buttons on Alphaberry and watching the letter appear on the screen and getting to hear it’s name!

It also sings the Alphabet in 4 different styles! Wanna hear them? Just check out the Alphaberry Page and try the “i make sounds” buttons! Way better then listening to the “classic” alphabet song over and over and over,  right?

This is the toy we never leave home without. In fact – we now have two of them! As a parent in a wheelchair, I needed something to keep Sophie from touching my wheelchair buttons on-the-go and this was fabulous! If she tried touching mine, I’d hand her this so she could have “hers.” It has buttons and a cool screen just like mom – but even cooler was the fact that it has sounds – now we never touch mom’s buttons because the $13 Alphaberry is WAY cooler then the $20,000 wheelchair (cheaper is always better with kids, right?)

Right now, I’m totally sporting it with my Beco Gemini Luna Carrier  I realized after how well the Alphaberry matched our carrier! – I told you B. toys has great colors!


Hellophone & FunKeys Share-Away:

Sometimes, when you have really fantastic toys, you end up with duplicates, right? Well that happened at our house! And since we already tell our friends about b. toys, and they love them too, we haven’t been to any parties where we could share our extras… So we contacted B. toys to see if a give-away was all right with them… and they came back with an even better plan: a share-away! to quote B. toys:
We’re big into sharing.  That’s why our toys come not with cross-sell brochures but with kids’ words of wisdom.  That’s why Hellophones and Alphaberries come in boxes that can be shared with mom or big sister to store notecards or hair doo-dads in.  That’s why we send 10¢ from the sale of every toy to Free The Children.
  • I have an extra brand new set of Red FunKeys & an Orange Hellophone that I want to share with 2 lucky readers 
  • PLUS: our friends at B. toys would also like to share a set of funkeys & a hellophone with those 2 readers favorite charities!!!
How To Enter:
  • Mandatory Entry: leave us a comment below telling us what your favorite children’s charity is, and why that charity is important to you! 
  • Extra Optional Entry (to increase your odds) in a separate comment: Tell us about a child you’d love to give the hellophone or funkeys to – who is he/she and why are they special to you? 
Only TWO comments per person please! Each comment counts as an entry!
TWO winners will be chosen - one for hellophone & one for funkeys – but if you enter twice you have a chance to win BOTH – plus one for your favorite charity!
Live outside of the US? no problem! We are happy to SHARE with readers all over the planet – after all it is INTERNATIONAL Babywearing Week, right? ;)

Oh, and while you wait for the share-away to end, be sure to stop by the B. Quotes and read some words of wisdom from kids – or share some of your own child’s quotes!

Don’t forget to come back on October 24th to see who we are sharing these great products with! –
and we have a few more upcoming giveaways so “follow us” to stay tuned for future share-aways & giveaways!



Links You Might Love:
Little Free Radical: facebook | twitterblog etsywebsite

DISCLAIMER: This shareaway is open to anyone on the planet! It will begin 10/16/2011 and end 10/23/2011. The winners will be announced in a separate post and have 48 hours to respond with their contact info & choice of charity. I was not financially compensated for this review. The opinions stated are my own. 
 

That’s all! I just wanted to tell you a few more of my favorite things when babywearing, and share our extra B. toys! I can’t wait to read your comments!

PS: Did you hear about the Babywearing Flash Mob Boston Babywearers did Downtown Boston? You won’t want to miss this! :)

GIVEAWAY: mitochondrial disease awareness week

Since Invisible Illness Awareness Week was last week (September 12 – 18) and this week is Global Mitochondrial Disease Awareness Week (September 18-24), I thought I would write a post explaining how Mitochondrial Disease affects me personally. So here goes:

I’m a 30 year old, living with childhood-onset, mitochondrial myopathy – one of the 42 diseases covered by the Muscular Dystrophy Association. In fact, it’s the same disease that MDA Goodwill Ambassador, Mattie Stepanek and his 3 siblings died of.

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.

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 other conditions including diabetes, some types of cancer, 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.

 MITO STATS:

• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.
• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.
• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.
• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .
• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.
• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world’s second leading cause of death by the year 2040.

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.

Of course, holding a ‘normal’ job is difficult when living with a severe disability – especially when you average 12-15 hospitalizations a year for things like heart failure, lungs collapsing, and sepsis (from central line infections) and GI bleeds. So, when I needed to work 40 hours a month to maintain health insurance after marriage, I opened Little Free Radical on etsy! I make stuff as I have the energy, and when I’m sick or in the hospital, I get all the “computer work” done (maintaining my website, editing listings, shopping for supplies, etc). I’ve also brought small tasks with me to the hospital – such as stringing my hang tags! I’ve learned to be sick and productive at the same time between naps! :)

Since there are no real treatments for mitochondrial disease, learning to conserve your energy is key! I’ve learned to balance my energy to not over-exert myself. Very rarely do I make something start to finish in one day. When I feel up to it, I’ll go cut out a bunch of projects, then rest. Another day I might sew some of it. If I get too tired, I complete the sewing on a different day. Then I have a pile of completed products that just need to be stuffed. :)

Naturally, I wanted to make some products for Mitochondrial Disease Awareness Week – products that would initiate conversations! So. these are the products I came up with for Mitochondrial Disease Awareness Week 2011:


This pin is designed to be a conversation starter to give people affected by mitochondrial disease a chance to explain the role of mitochondrial dysfunction with more common diseases such as autism, alzheimer’s, huntington’s, parkinson’s, ALS, diabetes, etc!!! 

 ABOUT THE PIN: This pin measures approx 1.5″ wide by 2.5″ tall. It is made with a piece of green ribbon, the puzzle piece is pewter, and hand-stitched to a pin-back! The edges are finished with fray check to increase the life of your pin and prevent fraying! 
It comes in a cellophane bag, pinned to a sage colored card professionally printed 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”

I also made some headbands with DNA fabric! Green is the color for Mitochondrial Disease Awareness and DNA represents Mitochondrial Disease as a genetic disease! The following sizes are available:

  • Baby – 6-12months: (fits head circumference 43 – 48cm)
  • Toddler – 1-3 years (fits head circumference 47 – 52 cm)
  • Child – 4-7 years (fits head circumference 50 – 55 cm)
  • Adult – 8 years – adult (fits head circumference 53 – 58 cm)
    If we don’t have your size, you can request custom sizing! :)

And last but not least, we have DNA cloth balls available in 4″ and 7″ – great toys for young children & kids with special needs!

A portion of each product sold goes to benefit MitoAction (Mitochondrial Disease Action Committee) – a Boston-based organization dedicated to improving the lives of individuals living with mitochondrial diseases through support, education and advocacy.  So far in the past month, through the sale of these products, I’ve been able to raise over $250 for MitoAction! you can get yours at http://littlefreeradical.etsy.com to help support the cause! :)

But, since it’s mitochondrial disease awareness week, I thought I’d do a GIVEAWAY for 3 lucky winners!

Prizes are:
  • A set of 2 Mitochondria: The Missing Piece Awareness Pins ($10 value) – or –
  • 1 DNA Headband (in the size of your choice) ($12 value)- or –
  • 1 DNA cloth ball set (in the color combo of your choice!) ($16.95 value)

You can enter for your chance to win by entering this giveaway via Rafflecopter. You must open the post for the giveaway widget to appear (click on the post title). Rafflecopter makes entering giveaways super quick and easy!



Mandatory Entry: Tell me in a comment below why Mitochondrial Disease Awareness Week matters to YOU! Additional entries are in the Rafflecopter widget (to improve your chances to win).

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