NaBloPoMo- What The Heck?

I’m going to let you in on a little secret. This month I decided to participate in something called NaBloPoMo. What the heck is that?

nablopomo

In a nutshell, NaBloPoMo is a national blog posting month (thus the acronym) where bloggers agree to post something to their blog every day this month. Wise Geek has an excellent description of all the whys and hows here, just in case you like to reasearch things thoroughly like that. I made the committment by  participating in a centralized network called BlogHer (I’m number 1508!) If you want to jump on the bandwagon and join with YOUR blog, today (November 5th) is the last day to climb aboard, or wait until next year.

Ok, I know what you’re saying…. so WHY are you doing this and WHY should I care?

I’ll tell you.

If you follow Living With Juvenile Arthritis on Facebook, or if you are reading this blog, you probably have someone you know or care about that has JA. Maybe you are part of a family with a new diagnosis, or worried that your child may have it but has yet to be diagnosed. Perhaps you care about the cause because approximately 300,000 children in the US suffer from some form of JA, yet the pediatric rheumatic conditions it encompasses are some of the most under publicized, under funded, and under recognized potentially life-threatening childhood diseases.

I’m not saying that just because BOTH my kids have it, and this cause means something to me. It’s absolutely true. Listen to what the Juvenile Arthritis Association has to say, if you don’t want to take my word for it:

Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.

A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined.

Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.

Disease Prevalence Private Funding (Annual)
Leukemia 1 in 25,000 $270m
Juvenile Diabetes 1 in 500 $198m
Muscular Dystrophy 1 in 10,000 $157m
Cystic Fibrosis 1 in 2,500 $126m
Pediatric Rheumatic Diseases 1 in 250 $2m

 

Pretty powerful stuff, right?

So back to my point. THIS is why I am doing NaBloPoMo, and why you should care. By committing to post every day for a month, maybe in my own little way, I can help get the word out and make a difference for these kids. Maybe it will help get a few more donations for the upcoming Arthritis Foundation event, The Jingle Bell Run. Perhaps reading posts like Halloween Challenges will be shared enough that next Halloween will be a happier holiday for kids with special needs. Hopefully reading posts like Things Aren’t Always What They Seem will change a few perspectives.

But I can’t do it if I don’t write and share it.

So there you have it. That’s why. Those are the reasons that I am committing to post EVERY SINGLE DAY this month, for NaBloPoMo. What the heck have I gotten myself into?

It’s only day 5 and believe me, writing every day is a challenge!  Even as author of Living With Juvenile Arthritis: A Parent’s Guide  I feel like I am “posing” as a writer- I am a published author, but I’m really a mom, a former NFL wife, and a non-profit manager- these are the things I really know about, the things I live every day, and the jobs that I have had. NaBloPoMo is helping me become a “real” writer because it’s making me do it EVERY day- and by committing to that, I am better able to bring awareness to this important cause.

If you would like to help me on the journey this month there are a few things that YOU can do!

1) read my blog- and look around! Please comment and tell me how I’m doing. Let me know if there is something that you want to see.

2) SHARE!  Let other people know! If you blog, link to me if there is something that you really liked. Use social media (like twitter, facebook, google +) to share a post that you thought was particularly interesting or important for others to know about.

3) Help other people find me through “votes.” Visit my BlogHer page and “favorite” your favorites or follow me there. Check out my badges in the sidebar and click the Top Mommy Blog picture cast your vote for me daily (it will take you back to their homepage through my unique link, counting as a “vote”) or endorse me by clicking on the Sverve badge, also in the sidebar.

As this is November, and the season of giving thanks, let me put it out there right now. I would be very thankful if you would do any or all of the above to encourage me on this part of the journey. But for now, I want to just say THANK YOU for listening and reading this far 🙂

See you tomorrow.

 

Related posts:

Comments:

  1. Hey there would you mind sharing which blog platform you’re working with?
    I’m planning to start my own blog soon but I’m having a hard time deciding between BlogEngine/Wordpress/B2evolution and Drupal.
    The reason I ask is because your design and style seems different then most blogs
    and I’m looking for something unique. P.S My apologies for getting off-topic but I had too ask!
    The North Face Nuptse recently posted…The North Face NuptseMy Profile

  2. Its such as you read my thoughts! You appear to know a lot approximately this, such
    as you wrote the e book in it or something. I think that you can do with some %
    to pressure the message home a little bit, but instead of that, this is wonderful blog.
    An excellent read. I’ll certainly be back.

    • Thank you for the kind words! When my kids were diagnosed with Juvenile Arthritis, I felt very alone. I wrote Living With Juvenile Arthritis: A Parent’s Guide, to help others and provide the info I WISHED I’d had. I hope that with the blog, I can encourage others on a regular basis, and highlight current issues and research when they are still breaking news. Thank you for stopping by!

  3. My thoughts and prayers are with you and your children. I struggle with my daughter’s JA; I can’t imagine two with it.

    • Thank you Herchel- Before I found out my second child had JA, it really was my worst nightmare. My older son had a very complicated case, and I had no idea how I could ever manage two! JA is a very strange condition, as it varies greatly from case to case. Luckily, my second child has a much milder presentation, and we were well prepared when he was diagnosed. In many ways, its almost like having an only child, and then preparing for the next kid- its different, but at least you have an idea of the way things will be. We were disappointed with the DX, for sure, but it didn’t send me over the edge like I thought it would. Its one of those things. I can’t change it, so I cope the best way I can. What other choice do we have right? We find a way to get through it, stay positive, and enjoy our lives despite the cards we have been dealt.

Leave a Comment: