Putting ice bucket envy to work

ice_bucketIf I had to describe one word that would sum up my feelings about social media this past week it would be “envy.”

OK, you find that strange, well, so do I, but still “envy” is the word and I don’t mean in the resentment, bitterness, and green-eyed monster sort of way. I mean it in the coveted, desired, aspire, and wish for kind of way.  I am not an envious person by nature. I have a wonderful full life. But even though I have all these good things in my corner, some new Facebook posts last week made me wish for one more thing.

I usually go on Facebook at least once a day.

That’s when I saw the post.

All over Facebook were posts about the Ice Bucket Challenges for ALS. Amyotrophic lateral sclerosis affects the brain and the spinal cord. Motor neurons degenerate and die which makes it increasingly difficult to move muscles. This is one unforgiving disease. It is also misunderstood and gets little attention compared to some other diseases. Most of us know ALS as Lou Gehrig’s disease.

Celebrities and Facebook friends were participating in these Ice Bucket Challenges to raise money and awareness for ALS. You dump a bucket of ice water over your head and record it on video and post it on your Facebook page. Then you challenge others to do the same within 24 hours. If they take the challenge they donate $25 to ALS, if they don’t take the challenge they donate $50 to ALS. What a great idea! What a worthy cause!  Either way money goes to a very important cause.

On August 17th the ALS Association announced that it has received $13.3 million in donations from over 250,000 people and the challenge continues to grow. Can you imagine the amount of research this money will fund? The help and hope it will open up for all of those who suffer?

President and CEO of the ALS Association said this past weekend: “Never before have we been in a better position to fuel our fight against this disease. Increased awareness and unprecedented financial support will enable us to think outside the box.”

These words are music to the ears of anyone who suffers from any serious chronic disease.

I loved seeing so many people who can make a difference, people who just want to give back and help others, celebrities and real people working together for a very important cause.

And yet, I was envious. Soon there were Facebook posts about why hasn’t someone thought of something like this for JA kids or RA families. Why didn’t I think of this? Why didn’t one of the many charities for arthritis think of this? Why didn’t you who are reading this think of it? But it’s never too late!

When I became an advocate for JA Kids almost two years ago I was very naive. I thought celebrities would gladly lend their name and their fame to helping create awareness for JA Kids. The photos and stories of these children are so heartbreaking who wouldn’t want to help them.

One of my close friends offered to put together a video for my Facebook page, Christine’s Kids.  He worked tirelessly to create a wonderful video. Sugarland gave me the rights to use one of their songs, Lynda Hayes gave me the rights to one of her songs. The results is six important minutes that tell the story of kids with Juvenile Arthritis who suffer on a daily basis and are misunderstood by the average person.


Very few of my media contacts wanted to talk about JA Kids. My good friend Deborah Norville spoke up, did a PSA and let us use her name and photo to help the JA cause. Al Michaels and Wayne Gretzky sent messages of hope and photos to Christine’s Kids.

But Deborah’s TV Show, Inside Edition was not interested in a story about JA Kids. Dr. Drew was not interested in a story about JA Kids. The Talk was not interested, Dr. Nancy Snyderman on NBC was not interested, GMA wanted happy giggles, not tears and the list goes on.

The reasons? It’s not a “sexy disease,” “people don’t understand that kids get arthritis,” “it’s an old person’s disease, we need young audiences,” “our television viewers are interested in reality and sexy, controversial TV”

Many in the media just don’t think arthritis is really a serious disease. They don’t believe that these kids are bullied. They are not aware that there are only 200 Pediatric Rheumatologist in the US to treat 300,000 JA kids. They know their grandparents got it when they were old, but kids? It must just be growing pains. If you explain Rheumatoid Arthritis–and that is what Juvenile Arthritis is–is a disease of the autoimmune system, affecting almost every part of the body, attacking major organs, and is totally different and much more serious than regular old age arthritis, people look at you like you are talking a foreign language.

So when the ALS Ice Bucket Challenge captured the imagination of the Social Media world I was glad for ALS, but I was also envious that Juvenile Arthritis wasn’t getting this same kind of attention.

Threads started on Facebook about doing something similar for JA. Something, anything to create more awareness and understanding and of course raise money for that much needed cure.

So in this instance envy is a good thing because it gets me thinking…what more can we do to let the world know about these special kids?

I guess just keep on trucking…keep asking. The media might think that JA is not be a big enough disease for television or not important enough for major print but to me and the 300,000 kids that live with it and their families who suffer watching them suffer, it’s a huge and very serious disease.

Every kid deserves a childhood. Juvenile Arthritis robs kids and teens of their childhoods. That in itself is enough reason to want to make a difference.

Congratulations to whoever thought of the ALS concept. Yes, I am envious (yet happy for you) at all this attention for an important and devastating disease. I can only imagine the hope this campaign brings to all of those who suffer. Much needed and deserved hope.

So in this case, envy is not a negative, but a motivator that translates to a constructive form of envy. It’s like adding supercharged gas to our advocacy engines.

Come on, JA/RA community, let’s start thinking of what we can do. Come on The National Arthritis Foundation and all of the many other arthritis organizations, let’s brainstorm together. Let’s turn envy into awareness for our kids!

christinegates

Bill Gates Pulls The Cord!

And Bill Gates, Oprah and Justin Timberlake, you were all kids at one time, think about your childhood. Think about it being taken away from you with Juvenile Arthritis. Think about a life in pain with doctors, hospitals and medicines taking up times you should be outside playing. And think about being bullied and made fun of, reprimanded by teachers because you couldn’t keep up with other kids, play sports or go to school dances.

christineoprah
OPRAH TAKES THE CHALLENGE!

It’s hard enough to be a kid, but a kid with Juvenile Arthritis whose parents watch them suffer as they administer strong medications in hope of getting relief. And who live in constant fear of what the future holds for their children.

I challenge you all, celebrities, politicians, rheumatologists, arthritis organizations and social media friends to come up with a challenge for Juvenile Arthritis.  Let’s take away the mystery and misunderstanding and replace it with hope and awareness.

 

christinetimberlake

Justin Timberlake Brings along some friends for the ALS Ice Bucket Challenge

5 Comments

  1. Christine,

    The way you wrote this post is very heart warming for me and it is two sided. In 1994 my uncle passed away from ALS after suffering for several years and this challenge as I would love to have participated, I was unable too. Those of us with RA and other various autoimmune diseases also cannot really deal with the cold/ice water, so instead I donated to the cause (I have several times a year since 1994). I also donate to the Arthritis Foundation, multiple times a year for many many years.

    A little background on myself; I was diagnosed when I was 13 years old, to this day I can not remember a day without the swollen and stiffness of my, hands, feet, ankles and knees. Now I can add the Cervical Disc Disease to the mix, the A Vascular Necrosis thanks to the steroids, as well as Sjogrens, Thyroid, Vasculitis, Scleritis and Fibro. I became an advocate for the AF when I was still working in 2006 time frame and held several informational video conference calls with my employees, and other manager’s employee’s through the large international company I worked for at the time.

    While my RA was progressing and I was still working I found CJ and Seth. I was on CJ boards everyday during work, after work and even after surgeries that put me on Short Term disability. I couldn’t find any local support groups in my area so I started my own. It was so much fun, met a lot of people and to this day I am still friends with them and continue to communicate on different levels with each of them. I still have some friends that I met here on CJ, Seth included as well as BIGTED if you go back into the history posts of the boards. Bigted is from Canada and she has come to Florida for several weeks to visit and will be coming to Valley Forge in October for my Son’s wedding.

    I am also the voice of the RA Patient in the http://www.rheumatoidarthritis.com “RA Voices” with Seth, RA Warrior and others, we can’t forget Little Dude. Seth and I did the satellite media tour together in NYC and Little Dude joined us for a short while.

    Well after this novel, I wanted to actually put out there what could we do? Does anyone have any ideas on a type of “Challenge” to put out there. The MS community has the 29 Days of Giving, ALS has the Bucket Challenge, the RA or the Autoimmune community has to come up with something fun…I don’t have the creativity to come up with a type of challenge, it is because I am a geek and give me a computer or any electronic device and I can make it work. Too logical and analytical.

    So I would like to put it out there on coming up with ideas here on CJ and see where it can take us!

    One last thing, promise! I loved your book! It was written from your heart and as a life long RA patient, I felt for you and all the folks that have a normal life then stricken with this disease. I don’t know any different and I pray for all of you. Thanks for writing the book, I have purchased it for several friends to help them understand and overcome the fears of being diagnosed.

    Be Well and Namaste
    Tess

  2. Christine,
    You have been reading my mind and although I have been thoroughly impressed by the ALS challenge, envy is definitely the correct word to describe my feelings this past week. It has motivated me to start thinking about what ‘challenge’ can be initiated for JA. Here in our small community of Brantford Ontario an adorable six-year old boy, Ethan Golden, is trying to collect one million dimes for juvenile idiopathic arthritis. He started with a lemonade stand this past summer. Hey maybe he is on to something, sell lemonade until you have reached the minimum amount of 25.00. At a dollar a glass, it shouldn’t take too long ;-) The secret in this type of fundraising is the ‘butterfly effect’. Instead of going for the huge dollars at expensive fund-raisers, it is the accumulation of the smaller amounts, over large groups of people that makes the difference. This is the power of social media and it works!!!

    My own story is too long to share and tragically it ends with the death of my brother, Craig, two years ago. I shock people when I tell them he died of complications from arthritis at 58 (he had it since he was five). This did not have to happen and I am now on a journey to somehow wrap my head around this, perhaps helping the cause a little along my way.

    Thanks for all your good work,
    Barb

  3. I thought a mitten challenge. You have to write something (RA/JA can happen to anyone maybe?) while wearing mittens to symbolize your hands working against you while you are trying to make them work.

  4. Profile photo of Grace Harmer Grace Harmer says:

    As someone who has JRA that has now continued on into young adulthood and little promise of going into remission, I believe the reason that there has been no such challenge on social media is because there is no simple task that conveys what it’s like to live with this disease. I think the first reason for this is because you can’t pinpoint JA to just one part of the body or just one type of pain, and the other reason is because there is no task you can do to convey JA without said task being cruel. A 10 second challenge does not even come close to what we go through every second of every day, probably for the rest of our lives.

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