Saturday, June 4, 2011

Batten Disease Awareness - Giveaway

Read on to learn about Batten.

Click this button to enter the giveaway and see below for bonus entries

This weekend is International Batten Disease Awareness weekend, and you all know I have a soft spot for Tatyanna and her relentless fight against this terrible disease.

Tatyanna is a very brave little girl battling Batten disease with the help of many lovely people who have joined efforts to allow her to benefit from the latest research. She is an amazing child who finds the strength to smile and hug other people's worries away, when she herself is suffering.

I am hoping this giveaway will help spread the word about Tatyanna's Hope and Batten disease. The giveaway will end June 8th at 11:59 EDT and you can enter by simply spreading the word about Tatyanna and letting me know. More details at the bottom of this post.

A little about Batten...
Batten disease is a rare inherited autosomal recessive neurodegenerative disorder and can affect children and young adults.

It is the most common form of the NCL (Neuronal ceroid lipofuscinoses) group of disorders. The four types of Batten disease are classified by age group: infantile NCL (INCL), late infantile NCL (LINCL), juvenile NCL (JNCL), and adult NCL (ANCL).

Batten disease is inherited through what is called an autosomal recessive pattern. It gets inherited like blond hair, i.e. if both parents carry a specific mutation in their DNA, their children have a 25% chance of being affected.

Research has shown Batten disease is caused by problems with the brain's ability to remove and recycle proteins. This is because mutations in the genetic DNA impair the body's ability of creating certain substances, which in turn causes the buildup of lipofuscin pigments in the body's tissues.

These lipofuscins pigments are considered "wear and tear" pigments, so research to cure Batten disease can have much larger benefits through the understanding of how the body deals with damage and aging.

Those affected with Batten disease literally waste away. It all starts with vision and motor skills loss, and over time seizures worsen, mental alertness becomes more and more impaired, muscle mass starts decreasing, and the child or young adult's life ends blind and bedridden.

Right now, there is no cure for Batten disease, and the very expensive treatments that do exist are only successful in slightly delaying the inevitable.

This doesn't have to stay this way however. There is HOPE!

Research is ongoing and eight genes have already been identified as having an association with Batten disease. Gene therapy for this disease is in its infancy, so more research is needed to help understand not only Batten disease, but many other NCL disorders.

Help spread the word!

The more people are aware, the faster research will progress. The faster research progresses, the faster a better treatment will be found, or even a CURE! The faster a cure is found, the more we can help Tatyanna celebrate many birthdays!

So here's to hoping this giveaway will help spread the word. You can enter by simply telling your friends about Tatyanna's Hope and letting me know. Be it twitter, facebook, blogging, emailing, or simply telling your friends, it all goes. Spread the word!

Up to 10 BONUS giveaway entries for finding the answers to the questions below :)
~ 1 ~ Who did she meet in this blog post?
~ 2 ~ What project did her sister pick?
~ 3 ~ Suitcases... they are like what?
~ 4 ~ How is milk packaged in this blog post?
~ 5 ~ What was Tatyanna's wish?
~ 6 ~ What color did they choose?
~ 7 ~ What did most drawings have in common?
~ 8 ~ What did Tatyanna use to say when offering coffee?
~ 9 ~ What did Tatyanna do to the TV?
~ 10 ~ Tatyanna made great progress during the treatment. What did she manage to do?

On June 8th at 11:59PM, one lucky winner will be chosen using and will win one of my HUGE Senbazuru, A Thousand Paper Cranes Get Well card, as well as a GORGEOUS one-of-a-kind beaded metal bookmark with the words of your choice (up to 15 letters) for a total value of over $20!

Entries (Giveaway closed June 8th 11:59 PM EDT):

@ApronsbyMeMe (1)
@ApronsbyMeMe (bonus 1) ~ WINNER drawn by
@ApronsbyMeMe (bonus 2)
@ApronsbyMeMe (bonus 3)
@ApronsbyMeMe (bonus 4)
@ApronsbyMeMe (bonus 5)
@ApronsbyMeMe (bonus 6)
@ApronsbyMeMe (bonus 7)
@ApronsbyMeMe (bonus 8)
@ApronsbyMeMe (bonus 9)
@ApronsbyMeMe (bonus 10)
@barleecreations (1)
@barleecreations (bonus 1)
@barleecreations (bonus 2)
@barleecreations (bonus 3)
@barleecreations (bonus 4)
@barleecreations (bonus 5)
@barleecreations (bonus 6)
@barleecreations (bonus 7)
@barleecreations (bonus 8)
@barleecreations (bonus 9)
@barleecreations (bonus 10)
@BattenDiseaseUK (1)
@BernoullisAttic (1)
@cntkreations (1)
@CrankyCatStudio (1)
@Demure4you (1)
@DesignsbyAudrey (1)
@FadedLeaves (1)
@ForgetMeNotSoap (1)
@hotglassbabe (1)
@JuliaPeculiart (1)
@kraftymax (1)
@lukehebe (1)
@PaintingByElfie (1)
@pur3h3art (1)
@rajankoshy (1)
@sandyunderwood (1)
@SilverSkyDesign (1)
@ThruSarasEyes (1)
@UrbanDivaStyle (1)
@WoolyBumblebee (1)
@youtubebeauties (1)
FarrOutDesigns (1)
KLDesigns (1)

Good luck and thank you for spreading the word ♥


  1. Hi an amazng reed! Brava to this fam! I tweetd and liked on fb, spredding this is importnt.

  2. Thank you SO much! It is the support of many people like you that helps everyone keep their HOPE going. Here's to a better treatment being found so Tatyanna can benefit from it and recover. If a better treatment were found, so many kids could recover! We need more research and clinical trials, this is not an incurable disease... it's just that a cure hasn't been found yet. Thanks again for your support and for spreading HOPE!