Skip to main content

Ice Bucket Challenges?

It's For a Great Cause Though!


I'm not a big fan of swimming, being in the rain, or anything where I get cold. But below I have posted my video of my Ice Water Challenge for ALS. Why am I doing this? A couple reasons, Mainly I have a dear friend with PLS (like ALS). I met Sean a few years ago at a Dream Factory Party. Side Note: The Dream Factory is like Make-A-Wish. I recieved a dream in 1995 (a computer) at the age of 10 from the Dream
Factory (based out of Peoria) and then in 2011 I decided to join the organization and volunteer. I mostly did work with social media and designed the website. However, I did get to grant one wish! I took a lil boy on a shopping spree at Best Buy for gaming and computer stuff! I met Sean at one of the Dream Factory functions.

Pic Right: Sean and I at an ALS Walk in 2012! 

 Sean was also a volunteer/ dream granter. And the two of us kinda just understood each other. Wanting to give to others with hardships( medically) in their life. I had Cystic Fibrosis and he had PLS, we talked about the struggles and postives of our medical problems. And overtime we became good friends.

The second reason I'm actually dumping water on me...yuck! (even though I made a donation)...is because an adorable little 5 year old nominated me. My babysitting boy, and let's face it... I can't say no to that cute lil face. So even though I'm donating, I'm still gonna create the video so my babysitting kid laugh.

Thirdly, I also want to do this so I can spread awareness about the ALS/PLS on my blog and on facebook with the video! You never know who may see it and donate and take the time to learn about ALS/PLS. I have discussed ALS before and if you don't remember Sean's Guest Blog/Interveiw from the past Please Read About ALS/PLS Here in the GuestBlog! It really is a great way to understand!

Here's my video. If it takes to long to load. It's also on my facebook page- listed on the right side!




There has been a lot of talk in the CF Community to do a Challenge of our own and hope it goes viral like the ALS challenge did. I mean, afterall the ALS Foundation has raised soooo much money and educated many people about ALS through this Social Media Fundraising. It could do the same thing for CF. BUT, this is why I think CF Community needs to hold off. Any Charity or group could do this, but let's face it, if every group did a Challenge to raise money for their organization. It would blow up Facebook and people would get really sick of it, not to mention we'd be stepping in and taking funding away from ALS.

I want to cure CF as much as anyone else, but I want ALS cured too. Why should I only fundraise and advocate for a disease when there are others that are equally as horrible. I also think over the last few years the CF Foundation has found a lot of new ways to raise funds and awareness. And while I do want to do a social media challenge I think it needs to wait. In the future it is a great idea and tool ( I've been in touch with a couple other CFers about ideas for challenges & there are some pretty creative ones) we can use to help strengthen CF awareness, but for now let's pause and help ALS. I don't want to redirect the spotlight to CF I want to make the spotlight on ALS even brighter!

Here are some more final Quotes taken from www.ALSA.org :

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. "

"When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy"

"Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing and later stages of the disease may become totally paralyzed. "

As you can tell from the quotes above ALS can really uproot and change a person's life. To be told you have a disease that can totally change your life can be overwhelming. Obstacles make life more difficult, but Sean is the perfect example of someone who can take on any obstacle and fill life with positivity. He doesn't let his PLS stop him from enjoying life and pursuing his dreams! I hope you took some time to read the interveiw/Guestblog above to get a full understanding of ALS.

This Ice Bucket Challenge is more than a fun video, calling our friends out publicly, and dumping a bucket of water over ourselves. This challenge is about sharing about motor nueron disorders and  I'm more than beyond pleased with how this challenge has increased awareness about ALS/PLS! When I talked about ALS in the past I feel like not many people really understood what is was, but thanks to this challenge is getting world wide attention!!!!

Here is the Link for the ALS Association Ice Bucket Challenge Page: ALS Ice Bucket Challenge Website!
Feel free to just read all about it, donate, or post your own ice bucket challenge and challenge your friends. Make sure to include the website link so they can donate!

Did you know about ALS before the ice bucket challenge went viral? What an amazing use of social media, we forget the power of social media. It can be so much more than announcing that you were five minutes late for work, but your happy hour starbucks made your day all better...And I love seeing the passion to share this disorder spread like crazy! Let's use our social media to change lives!



Comments

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appoint...

The Stork Came!

It finally happened!!! The Stork came to our house!! We had 3 kids placed with us (on August 4th) Friday afternoon. Luckily, Andrew was able to take off Friday-Monday (Aug 4th-7th) to be home as we all adjust the first few days. He then worked 8th-12th, but we needed him back home more until the kiddos started school. So took a full second week off, because it was really rough ! Big thanks to Culvers & Phil for allowing us time we needed. I love having kids in the house, but it's a lot of appointments for these kiddos at first. . For privacy reasons, I will never use their names or post pictures of them.  I have made fake names for these posts. When they called I was a little nervous to take 3 kids at once, especially since I have Cystic Fibrosis. We had agreed on only 2 originally. But, the lady explained the 3 of them really needed somewhere. Most foster parent's don't take sibling groups and it is really rare to find one that will take three, so our hearts wanted to ...