Why I'm not taking the #IceBucketChallenge

For months I've seen the ice bucket challenge all over social media. My husband took the challenge back in the spring for the National Fallen Firefighters Foundation. At that time it seemed like the challenge was just to promote giving across the board. In the past week or so the trending charity in ALS - amyotrophic lateral sclerosis, often referred to as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain. It's not that I don't find this a worthy cause - I most certainly do - but recently I found out that my sisters genetic condition has progressed and she is experiencing similar neurological deterioration due to holes in the myelin sheath of her brain. 

 In honor of my sister I will be donating to the Myelin Repair Foundation. In addition to research, this foundation is currently testing a trial drug on patients with multiple sclerosis to repair myelin sheath. This work is important not only to those with MS, but could also potentially benefit anyone with a degenerative neurological condition including Parkinson's, ALS, Alzheimer's, and spinal cord injuries. I will also be donating to the National PKU (Phenylketonuria) Alliance.

 I want this girl to keep exceeding the expectations of her doctors. She's one of a kind and the best kind of awesome. 


 
To find out more about the work of the Myelin Repair Foundation visit: http://www.myelinrepair.org. To find out more about PKU visit the National PKU Alliance: http://www.npkua.org.

Comments

Post a Comment

Popular posts from this blog

Custom Faux/Foam Pumpkin Tutorial

Image
A couple of weeks ago I posted about different ways to decorate pumpkins for Halloween and fall. Below is a photo tutorial for how to carve your own custom faux foam pumpkins. Start with the image of your choosing. This design needed some spacing added so that the pumpkin didn't fall apart! Gather your supplies - any size foam craft pumpkins; printed design (to fit); pencil; masking tape; thumb tacks; traditional pumpkin carving kit poker or paper piercer; heated knife. Here's a closer look at the heated knife kit (sold at most craft stores). Layout your design on your pumpkin, securing in position. I like to use both masking tape and thumb tacks. Poke around the design making sure to leave gaps in any connected spaces. After I have the design poked onto the pumpkin I like to remove the paper and draw the design by connecting the dots to make sure that there isn't any space that is going to get cut out inadvertently. Carefully carve out your
Read more

Birth Week & Wishes

Image
It's birth week!! I sit here thinking about how I used to make out a birthday list every year. And soon after a Christmas list. As I grew older, I made general wish lists that encompassed lots of different things for various holidays, which then turned into goal lists, and now I have "to do" lists. Actually, not only do I have "to do" lists, but I have post-its and dry erase boards and reminders on my phone and email for things that I have to accomplish. Getting older my dreams have turned into tasks; not things that I want to do but things that I have to do. So here's a list of wishes instead of tasks... GROW my business into more than a hobby Take time to RELAX; manicures, massages, dancing in my living room EAT DESSERT first and maybe just by itself Tell people how thankful I am for THEM Spend time with my FAMILY Buy PRESENTS for others, just because TRAVEL somewhere new Be okay with SAYING NO Make a CHRISTMAS LIST Take my DOG for walks
Read more

Mason Jars and OCD

Image
Something you should know about me is that I have obsessive personality tendencies. Like I once decided that I needed to have a pink wool coat for winter. I looked and looked and didn't find one, but then the next year there were pink wool coats everywhere and I finally got one. I also became obsessed with finding a particular pair of pink Reebok tennis shoes . This almost happened this past spring with kelly green shorts. I was satiated with some lime green pants. I became enamored with Sweet FROG after my first encounter. Have you ever tried the mix-your-own-toppings delight? I love their strawberry/cheesecake swirl with fruit added in. Sometimes I get wild and add some peach yogurt if they have it. But I found what I like and don't really deviate to find other flavors. I love owls . I pledged a sorority in college and their mascot was the owl. I found out that my grandparents had some and they became mine. Now I have them everywhere. On my desk at work I have a bank,
Read more