#cmt4j

[candescent-creed]

signal boost

My best friend’s cousin, Talia, was diagnosed with a rare terminal illness called CMT4J, or Charcot Marie Tooth Type 4J, which is a progressive neurological disease similar to ALS. Only 22 people in the world have been diagnosed with it. There is currently no cure, but scientists believe that gene therapy could hold promising results. Her family needs to raise one million dollars by the end of 2017 in order to fund the clinical trial which could save their daughter’s life — and the research of which could also save the lives of countless others.

They are halfway to their goal. There are three weeks left in the month of December.

I’ve only met Talia a couple of times, but she’s such an amazing, sweet, happy child. She’s a child in the sixth grade with her entire life ahead of her, and this trial could do wonders for her.

This is their website where you can donate: https://donate.curecmt4j.org/campaign/cure-cmt4j-advancing-gene-therapy-for-rare-diseases/c117605

And if you can’t donate, I understand, but please reblog, spread the word. Go to their Facebook page (Cure CMT4J) and share the videos there. Please, Talia is such an amazing little girl, and her family is doing everything they can, but they can’t get there without help.

[penicillium-pusher]

My friend’s cousin Talia was diagnosed with CMT4J and needs help funding a cure. Here are some words from her: 

Please, please help make this video go viral! You may have heard already, but my 11-year old cousin Talia was diagnosed a year and a half ago with a terrible neurological disease called CMT4J. It's similar to ALS and will be terminal if we can't find a cure. The amazing thing is that there's the possibility of a gene therapy cure . . . the awful thing is that there's no funding for it. In response, my aunt and uncle started the Cure CMT4J Foundation which is trying to raise $1 million by the end of the year to develop the treatment that could save her life. Incredibly, we're halfway to the goal. But we're also onlyhalfway to the goal, and we have less than a month to go. Talia is one of the bravest, most loving, silliest, and most stubborn people I know. She spreads joy wherever she goes, and I can't imagine life without her. If we can get this cure developed, it could save not just her, but also so many others who have rare genetic diseases! The treatment has already been successful in mice--we just need to get it to clinical trials for humans! Talia's 6th-grade classmates made a video to raise awareness about Talia's story, and they want to make it go viral! Please share it online in whatever way you can! Facebook, Twitter, tumblr, Instagram, etc.! Every little bit helps!! You can find out more about Talia, CMT4J, the research, and the organization and/ordonate at curecmt4j.org. With many thanks and lots of hope,Lindsey ❤

[chromodramas]

PLEASE TAKE A SECOND TO READ/WATCH

Talia, my friend from high school’s 12-year-old cousin, was diagnosed about 18 months ago with a neurological disease called CMT4J. It's similar to ALS and will be terminal if they can't find a cure. There are tons of possibilities with gene therapy, but unfortunately there isn’t much funding for it.

As a result, my friend’s family has started the Cure CMT4J Foundation, and they’re trying to raise $1 million by the end of this year -- but they’re only a little past $600k as of December 13.

To find out more about the cause or donate, go to curecmt4j.org.

I am asking (BEGGING) all of you to help my friend and her family by reblogging this to help raise awareness for the cause. Just getting the word out on here is helpful in itself, and if I could somehow get Taylor to see it (she doesn’t follow), I know she’d find away to help, be it by donating or simply helping raise awareness by reblogging/posting about it (either one, it goes without saying, would be endlessly helpful).

Thank you!!