Why The ALS Ice Bucket Challenge Matters to Me (And Why There’s No Excuse Not to Participate)

It started with a phone call to plan our vacation. My mom got off the phone, turned to me, and said “Something isn’t right with Faye.” Puzzled, I asked what was wrong, and she voiced concern that Faye was slurring her words. We both speculated, worrying Faye had experienced a stroke or some other issue.

When we actually went on vacation, it was more prominent. There was no doubting it, Faye was slurring, and her hands were a bit tense. I think we all had an idea of it, but none of us wanted to say the words, that acronym. After all, we’d already lost at least one family member to the horrible illness, and the thought of another going through the same horrible, trapped fate was terrifying.

A diagnosis confirmed it… Faye had ALS, Amyotrophic lateral sclerosis. It meant that, over the coming months, she’d lose her ability to speak, her ability to eat, her ability to move normally. She’d resort to writing what she needed to say, and eventually, she’d lose the ability to do that, as well. If someone baked cookies, she’d be unable to enjoy them. If she was craving a bagel, she couldn’t eat it. Her mind would function, but she couldn’t turn those thoughts into spoken words. She would literally become a prisoner in her own failing body before eventually succumbing to the disease.

Faye was at least the second person to be affected by ALS in our family. My great grandmother Lena also had ALS. Some types of ALS are more prevalent within a family, people predisposed to it based on genetics. Having more than one person in our family diagnosed was not a positive sign.

ALS is relatively unknown and rather underfunded. Unless you call it Lou Gehrig’s Disease, a lot of people don’t even know what you’re referring to. Essentially, people either have no idea what ALS is, or they know the horror of it because they’ve seen it or been affected by it. There’s very little in-between.

Or at least, there was until around July 29, when the ALS ice bucket challenge began. People around the country, and soon, the world, started dumping buckets of cold water on their heads to raise awareness for this terrifying condition. More and more people joined in. Celebrities started participating. Politicians did it. Kids did it.

Searches for ALS on Google increased greatly. Donations did, also, with people rushing to fund research for ALS. People finally were finding out what ALS was and why it needed to be funded. A lot of us who had seen ALS firsthand were relieved, excited, and ready to participate.

And then, like any viral sensation on the internet, the haters started in on the ALS ice bucket challenge.

“ALS kills fewer people than (insert cause here) so it isn’t worth donating to.” Great. Donate to another cause. Or donate to ALS and another cause. But just because it doesn’t kill as many people, or even affect as many people, it doesn’t make it less valid of a cause. While you may not be intending harm by saying this, to someone who has experienced it and seen it first hand, you’re basically saying “Other loss is more important than your loss because it affects more people.” To me, their loss is significant, and so is mine. Let me donate to the cause I support, and you can do what you please with your time and money.

“The Ice Bucket Challenge is a waste of water.” Only if you let it be a waste of water when you participate. If you’re concerned about wasting water, there are several options. 1) Donate, but don’t dump water. A lot of people have done it this way. 2) Do what the awesome Peterson Farm Brothers did in their Ice Bucket Challenge, and water your crops while you’re at it. 3) Do what Matt Damon did and use toilet water. 4) Do what one of my Facebook friends did and make your donation to ALS research, then instead of dumping water on your head, donate water bottles to a local homeless shelter. Her family made their ALS donations, then donated 30 cases of water to the homeless. It’s only a waste of water if you’re letting it be one, and you can participate while getting creative if you choose to.

“ALS organizations use their money for embryonic stem cell research, and I’m not okay with that.” Great. Neither am I. You can donate to another ALS research charity that doesn’t use their funds for embryonic stem cell use. One good option is the MSCTC, which only uses adult stem cells, with another being at the Mayo Clinic, also using adult stem cells. Christian bioethicist David Prentice recommends both of these charities as good options. Additionally, 501(c)3 guidelines say that you can specify your donation anywhere not be used to fund embryonic stem cell research. The organization has to comply and use your funds in other ways, or they’ll risk losing their tax-exempt status. Sidenote: I do not recommend donating to JPII Medical Institute, where funds are not going to research ALS, but instead, being used to build a clean room and lease laboratory space. There is no confirmation of intention to use these funds for ALS-specific research. Finally, you’ll want to know that Carrie Munk from ALSA says that they primarily also fund Adult Stem Cell research, and that, while the ALSA has one program using embryonic stem cells, it’s funded by one donor who very specifically is dedicated to that line of research.

“ALSA tests on animals.” Yes, The ALSA does test on animals. Significant advances have been made because of this fact. However, unlike many believe (possibly thanks to Pamela Anderson), the ALSA doesn’t do primate studies, and if you’d like your funds not to go towards animal testing, you can specify that when you make your donation, and they will honor it.

“I cannot do it because I work for the government.” There are some government agencies that are saying that participants cannot do it by identifying themselves as part of that organization (specifically military). That said, most military members are able to participate as long as they’re not doing so while in uniform or identifying themselves by their military status. Additionally, there are some government officials who are strictly barred from participating in the ice bucket challenge. That said, none of those people are barred from donating their money where they’d like, including to ALS research. So, just because you can’t dump water on your head if you work in certain fields, well, you can still put your money where your mouth is and give a little bit.

“I don’t have money to donate.” If you absolutely cannot donate money to ALS research, and if you don’t have the money for ice, that’s okay. Participate in the challenge. Film yourself dumping water on your head. And then, explain what ALS is and why research for ALS is important. Beyond the donations, the Ice Bucket Challenge is a great way to help more people learn about ALS. While obviously, donations are very beneficial and I love that people are choosing to donate, I also recognize that some people can’t. Awareness is also important, and I think that people can participate even without donating.

To be honest, with all of the hate that the Ice Bucket Challenge is getting, I simply have yet to find a single valid reason why someone could not find some way to participate at all. Perhaps it’s because the cause is very personal to me, but I see that a lot of the reasons not to participate really don’t make sense when you take the time to see what options are out there.

Obviously, I can’t force anyone’s hand in doing the ice bucket challenge, and I wouldn’t want to. I want people to participate because they want to participate. But I also don’t want some of the louder voices that are shouting why participation isn’t a good idea to shout louder than the truth behind those statements– that to every side that says don’t do it, there are still ways you can do it and reasons you should do it.

If nothing else, do a little bit of reading on what ALS is like, what it feels like, how it affects people. Think about the experience of being absolutely trapped in your own body. And then decide whether or not you feel like it’s worth putting a few dollars towards or dumping water on your head. To me, the ALS ice bucket challenge is an opportunity. And if you don’t plan on participating, please don’t tell me how bored you are of it. I sit silently during Movember, even though the cause isn’t as relevant in my life. I watch other charities, diseases, and causes get their time in the spotlight. For once, ALS is in the spotlight. It’s got the attention of the world, and more people than ever now know what ALS is and what it’s effects are.

I implore you… let ALS have this spotlight, just for this little bit. It won’t last forever, and you’ll be back to browsing videos of kids taking selfies and news about the atrocities going on in the world. But for now, let ALS have it, even if you don’t plan on joining in on the fun.

And trust me… participating can be pretty darn fun.

With that, I’d like to issue one final challenge. Readers, I challenge each and every one of you to participate in the ALS Ice Bucket Challenge. Whether you participate by donating, but dumping water on your head, or in any other capacity, I’m nominating you.

Have you done the ice bucket challenge? Link up your video in the comments below! Not participating? I’d love to hear why!


Love With Food: Small Company, Big Goals

When the nondescript white USPS mailer landed on my front porch, I wasn’t expecting much. It was relatively small, so I assumed it was one of the many items I occasionally order or receive from companies related to my blog.

When I opened it, though, I saw a red box. It wasn’t any ordinary box. It was a red box that I had been pining after, anticipating, and counting the days until it would arrive (my countdown wasn’t exactly an accurate one, which is why I didn’t recognize the white package immediately).

The box wasn’t particularly large (compared to other boxes I receive), but I knew it would be packed with some amazing stuff.

Love With Food is relatively new to the subscription commerce world. There are so many hundreds of different boxes that it’s often hard to keep up. I did get the opportunity to try out Love With Food at a very low price, and decided it was worth taking that risk one month and seeing if it was a box I liked.

I never realized when I spent that small amount on the box (the price is already low anyway– at $12 including shipping, it’s not exactly a huge financial burden– but the price I scored it at was perfect for trying it out), how impressed with the company I would be.

I already loved the company’s idea: Every purchase helped Love With Food donate food to someone in need. One box=one person helped.

When I signed up, I was thrilled about the concept… I got something, someone in need got something, and it was totally win-win. Not long before my order shipped, the East coast got hit with a superstorm, Sandy, that destroyed homes, destroyed businesses, and for some, destroyed lives.

Love with Food could have decided to just give the food they donate to the East Coast. But instead, they went one step further.

My box purchase for the month meant that not only were they going to make their usual donation, but on top of that, they would donate an additional portion of food to relief efforts in the East Coast region. This meant that twice as many people would be blessed by their company, a company I helped support by ordering a box.

But the big question was… even if it’s helping others, was the box personally worth it to me? Because truly, I can do the work of donating food myself and helping families in need, but when it comes to the box, is it worth it to spend the money on the box itself? And the bigger question: If I had paid full price for this box, would it have been worth it?

The answer is a resounding “Yes.”

This month’s box was guest-curated by Amy Roloff of TLC’s “Little People, Big World.” She’s just recently released a cookbook called “Short and Simple Family Recipes.”

Amy has lovingly prepared meals many times on the show Little People, Big World, and now you’re able to prepare those recipes, too. While the box didn’t come with a copy of her book, autographed copies are actually available at a discount in the Love With Food shop.

It’s true, Amy knows good food. In this box, she took time to tell Love With Food about her fall favorites, perfect for a November box.

The first couple of items I saw in my box were the Stash Pumpkin Spice Tea and the Mulling Spices Blend from the Aspen Mulling company.

The Stash Tea Company produces amazing teas that I already have experience with (I’m a huge fan!), but I had not had the chance to try Pumpkin Spice before. It’s a naturally decaffeinated black tea, and they’ve added nutmeg, cinnamon, and ginger, which are some of my favorite spices. While the taste is absolutely incredible, nothing beats the smell of this tea. If I could purchase the scent of that tea bag to freshen up my car or my linens, I absolutely would.

I have not tried the mulling spices from Aspen Mulling Co. While I could use it in hot or cold cider, I’m actually considering mixing it into pancakes for a fall favorite! I’m just waiting for pancake night to try it out!

When I saw the Mini Crunch from Mrs. May’s, I was thrilled. I am a huge fan of blueberries… in fact, I even blogged about my love for blueberries back when I was pregnant, having eaten nearly 3 pints of blueberries each week during the season’s peak. I even have my own blueberry plant because I’m so in love with blueberries. I had hoped to wait and try these crunchy little bits on a salad or on top of yogurt, but I simply couldn’t wait… I ended up eating the entire packet straight out of the bag. They’re a great snack that way, but I still want to order more to top some yogurt with!

As for Skeeter Snacks cookies, I had never heard of them before. It’s a surprise to me that I hadn’t, because I love finding nut-free options in snacks. My cousin has a severe nut allergy, and I work very hard to double-check for nut-free varieties so there’s always a snack on hand for him, or for my son’s nut-free friends. I was that girl in college who would always double-check that she had nut-free selections for Halloween when our dorm opened up trick-or-treating, just so all of the kids could have fun with it. These cookies are a great option. I wasn’t a fan of how overly crunchy they were (I like my cookies super soft), but overall, they tasted good… my brother ended up stealing the whole second cookie! Just days later, I found a coupon for Skeeter Snacks in my newspaper, so I’ll be on the lookout for them soon.

I wish I could tell you what I thought of the Mango Pear Pineapple from Fruit.o, but because Zach is used to having his own snacks in a similar pouch, he pretty much immediately comandeered the pouch for himself. I have to think it must have been good, because it was gone in about 30 seconds. I like that it’s 100% organic and has no added sugar, making it a great snack for him. Next time, I may order extra so I can try some, too!

The Inka Corn corn nuts are actually harvested from non-GMO crops. It’s a roasted giant corn that is perfect for snacking on. I made the mistake of sharing my Love With Food box with so many members of the family, because it was everyone’s favorite. I went to order more from the Love With Food shop, only to find that it was totally sold out. I’m excited to look for it elsewhere because it had the perfect crunchy flavor with just the right amount of nutty, salty taste in the corn. I think it may quickly become my go-to snack (as soon as I can track more down). Like I said, it was the absolute favorite of everyone, including me.

As for the Truffle Pig from Hagensborg Chocolates, I honestly laughed when I opened the little blue wrapper. I knew that the packaging called it a “truffle pig” but I didn’t realize that when I opened it, the chocolate would actually be shaped like a little chocolate pig! It was one of the cutest things I had ever seen (at least in terms of food). I would have shared, but it honestly didn’t last long, because it was truly delicious. I loved the flavor, perfect and creamy milk chocolate that really had just the right texture and flavor. As a chocoholic, it was the perfect bite-sized treat to end my day with. For a long time, I’ve had this little tradition of enjoying a truffle at the end of the day, before bed, as a nightly indulgence. After trying a Truffle Pig, it’s now been added to my list of truffles I love, and I plan to order it again soon.

The Turkey Bak Kwa from Little Red Dot Kitchen was arguably the strangest treat in the box. I had anticipated something like the dry jerky of my childhood, but this was moist. Like really moist. Like almost juicy moist. This Bak Kwa was featured in Food and Wine magazine, and for good reason! It’s delicious. The texture did throw everyone off at first, but it is something I would eat again. The Asian twist on it made it a hit with me, and I seriously thought this would be good chopped up and mixed with Asian noodles and broccoli.

Finally, the boxes came with some gift certificates– $10 off at EcoMom (a favorite store of mine as it is) and a $5 credit at PicPlum (a shop that was brand new to me).

I saved the EcoMom gift certificate for later, because I neglected to read the fine print and spent about an hour deciding on which of Zach’s favorite snacks to use it on, only to find out that the fine print said I couldn’t buy food with it… oops! I’m still deciding how I want to use the certificate. The funny thing about the EcoMom gift voucher is that with every purchase, EcoMom donates one day of food to a child in need. By purchasing this Love With Food box, I fed three people (in addition to myself) because Love With Food feeds one, and then they fed an additional one due to Superstorm Sandy, and then one more by using this Gift Voucher to order from EcoMom, who donates food to those in need. Oh, and funny story. I recently did place an order to EcoMom (unrelated to my Love With Food voucher) and when it arrived, it had a card with a coupon code for new customers to get $5 off a Love With Food subscription. Looks like these two have created a very good partnership.

PicPlum is a company that does photo prints, including square prints (perfect for Instagram photos!) You can even send them anywhere in the world! I love this because I have family in many countries worldwide, and I love the idea of being able to send a photo to my siblings in Germany, Brazil, or Sweden. This time, I had them sent to myself. I had been meaning to order an 8×10 of a picture I took of Zach at the park recently, so I took this opportunity to order that, along with three 4×6 photos. While PicPlum made me reel a little bit at the sticker shock at first, when I compared print prices from them to other premium photo printers, I found out that they printed at more affordable pricing and had better size options, as well as better shipping options (having the choice to send the photos anywhere with an attached message was cool). The quality was very good, too, and I love the way the 8×10 of my son printed– very true-to-screen when I was working on the photo.

So now, it’s your turn to try Love With Food. If you like what I’ve had to say about it, try it out and order a December box! Not only will you be getting a curated box of treats you’ll love, but you’ll also be helping someone in need. And, for December, Love With Food will still be donating food to Sandy relief efforts, so you’ll actually be helping two people.

Click the button below to head over to their site and order if you’re interested in Love With Food. I really hope you’ll give it a shot… it’s a great company and it’s doing a service I’m very passionate about– giving food to those in need.

Love With Food - Discover Great Food for a Great Cause

When googling coupon codes for Love With Food, I did find one for $5 off a box, but it’s not valid for long, so hurry and use it. Enter HOLIDAY12 at checkout (valid until tomorrow!) so if you want to try it out, now is a great time to make the leap and test it, at least for one month.

One more thing… when you order boxes, review the products inside, or refer friends, you earn points. Those points can be put towards items in the Love With Food shop. The shop not only has full-sized versions of the items that came in the box, but it also has items that complement the products that you received (for example, this month, in addition to items in the box, I saw autographed copies of Amy Roloff’s book, Bhakti Chai, and items featured in previous boxes.

All opinions are my own, and Love With Food, Amy Roloff, TLC, or any of the companies mentioned above have not reimbursed me in any way for my post with my honest opinion. The Love With Food badge above does link to my unique referral link. Other than that, I have received no reward for this honest post.