Wednesday, October 23, 2013

NMO and a chance to win yarn, patterns and socks

The internet, and more specifically Ravelry, has brought me in touch with so many lovely people. People I would never have met in real life.

Occasionally I get overwhelmed by all the negative stories in the media, on blogs or which people share in the various forums I read on Ravelry. That's when I try to think about the good people I've met and heartwarming stories I've read. People who have persevered through personal trials and survived, even thrived sometimes. People who've come together on Ravelry to help out a single mother or victim of domestic violence. Sometimes the support is a stream of encouraging words, sometimes it's clothes or toys (for the kids), and sometimes the support is monetary.

I've sent money and clothes to Ravelry community members. I do it because I've been very fortunate in life. I have a well paying job (as does my husband. I have a house, a healthy family, great friends and I live in a country where health care is free (although paid for with taxes). So I pay it forward when I can to people or causes which I find worthwhile. I want to know my resources are helping people directly, not funding administrative overhead.

To that end, I share with you some information from one of my Ravelry friends, Stacey. Stacey has NMO and is raising funds for NMO research. Even if you don't or can't contribute, I hope you'll at least find the information about NMO interesting.

From Stacey:


NMO stands for  euromyelitis optica, originally known as Devic’s Disease. NMO is a rare, incurable autoimmune disorder. (There are an estimated 4,000 cases in the United States and a half million worldwide) The body’s immune system attacks its own healthy cells, most commonly in the optic nerves and spinal cord. It can cause temporary or permanent blindness and/or paralysis, and may have periods of remission and relapse. 

The Guthy Jackson Charitable Foundation ( http://www.guthyjacksonfoundation.org) was started when Bill Guthy and Victoria Jackson's daughter was officially diagnosed with NMO in June 2008. Because NMO is considered an orphan disease, there is little or no research funding available. The Guthy Jackson Foundation puts 100% of donations into research. That's right 100%. They even "pay back" the paypal fees that they incur with donations out of their operating budget.

How do you get a chance to win?

Click here to go to the Guthy Jackson donation page, choose “Memorial Donation” and put Stacey Pope in the “purpose” section.  For every $10 you donate, you’ll get one entry. If you share this contest on Facebook, Twitter or wherever (and let me know), you’ll get another entry.
Deadline to enter is November 1, 2013 (12 noon Texas time) and I’ll be announcing the winners on November 2, 2013.
Prizes:
  • Madelinetosh Tosh Sock in Green w/Envy and any one of Maureen Foulds patterns (left)
  • Approximately 2310 yards of Cash DK (merino/cashmere/nylon) in the Superhero Collin color way. (center)
  • Beaverslide Dry Goods 2 ply sport/sock yarn in Hidden Lake and any one of Maureen Foulds patterns (right)
  • A pair of hand knit socks from Maureen! Even better, they will be the prototype for her next design! (measurements will be needed by 11/8 and socks will be sent in late January/ early February)



PS. I asked Stacey what she meant by an "orphan disease". Here's what she said:

Orphan disease: a rare disease that only affects a small percentage of the population(i.e. only estimated at 4000 people for NMO). It's a nicer way of saying there is a lack of treatment and resources because it's so rare.

Basically: "A condition for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will [be] recovered from sales in the United States of such drug"

1 comment :

  1. Thanks Mo! One of my favorite things about raising money for them is the fact that 100% goes to research. AND! They make the doctors that they give money to talk to each other and share their findings. No paying for the same thing twice. This "model" has allowed so many breakthroughs that never would have happened the old way.
    When I got correctly diagnosed in 2009, I was told that I would most likely be blind in at least one eye and or partially paralyzed within 5 years. Now, with early detection (there's a blood test now) and treatment, that is no longer the case.

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