Showing posts with label SMA. Show all posts
Showing posts with label SMA. Show all posts

Monday, June 21, 2010

Facebook article in newspaper

I am a published author. Ok, I've been a published author for several years now. Does having articles published in your local newspaper count as being a published author? I doubt it, but this is my FIRST front page article. It will be published in the Wednesday, June 23, edition. Comments in blue are notes from me & will not appear in the paper, LOL
Facebook users can vote for county charities (I think that's the title of it.)

By RaNAE BARTLOME
Citizen copy editor (Rod wasn't going to give me a byline credit, but I didn't want Tom, who writes as CITIZEN STAFF, to get credit for MY story.)

The power of giving is in your hands at Chase Community Giving on Facebook. A few months ago Chase gave away $5 million dollars to 200 charities. They are back to give away another $5 million. We can help decide which 200 charities receive donations.

Eleven Franklin County charities, and many others throughout Cache Valley, are entered in this go round. These charities are the Oneida Stake Academy, Franklin County Healthcare Foundation, Preston Community Food Pantry, West Side School District, Preston Education Foundation, Franklin County Theatre Arts Council (FCTAC), Franklin County Senior Center, Wyatt Foundation, United States Bowling Council, Idaho Sportsman for Habitat and Northern Cache Valley Theater Guild (NCVTG). (Don't vote for NCVTG. It is no longer a valid charity. They changed their name 6-7 years ago! It is now FCTAC.)

All we have to do is vote for them. However, there are over 7,000 charities entered. As of Monday, the top vote getter had over 1,000 votes, the lowest of the top 200 only had 61. If Big J’s (a local fast food restaurant) can get over 1,000 (Facebook) fans in just 2 weeks, the potential is there for one or more of our charities to make it into the top 200. If a charity just makes it into the top 200, they will receive $20K. How easy is that? You don’t even have to remember to go to the library or the Robinson Building (local community center) to vote (and spend 5 minutes arguing with the election person that your last name really doesn't have an "h" in it. After all you know how to spell your last name better than she does). All you have to do is log into your Facebook account and vote from there.

Here’s how to get started. Log into your Facebook account, type in Chase Community Giving in the search bar at the top of the page, above your name. That takes you to the home page of Chase Community Giving. Halfway down the page it says, “Voting Open Now.” Click the “Like” button and you are in. There is a button that says “Search & Vote.” Click the button and enter 83263. Franklin County charities are on the first three pages. Each participant has 20 votes.

Chase will close the initial voting on July 12.

Another round of voting will begin in which the top 200 vote getters from the current round of voting competes. The top charity receives $250,000, four will receive $100,000 and 195 others receive $20,000!

I blogged about Chase Community Giving a few months ago here and here.

I would really like to see these 7 charities up there in the top 200 charities. Right now there are only 9 votes for the Oneida Stake Academy & 3 or 4 for the other 7. NCVTG has 2 votes, mine & Don's. That was before we found out that NCVTG was no more. Three of the charities have no votes because I voted for 5-6 SMA charities.

Wednesday, March 10, 2010

Kindle4PC

I know I've told you about the Gwendolyn Strong Foundation, a couple whose daughter has SMA. When I checked their blog the other night the entry was "Kindle for a cause." As I was reading the entry I thought, "That's nice. I don't have a Kindle." Then at the end of the entry it said that you don't need a Kindle, it can be downloaded onto your PC or iPod. Now, I was actually thinking iPod. They had provided a link to Amazon. I couldn't find where I could download it onto my iPod, but I did download Kindle for PC. It's free! Then I bought the book, Not A Fire Exit for $1.99. All proceeds went to the Gwendolyn Strong Foundation if you bought the book on March 7th and 8th.

Not A Fire Exit, Christopher Finlan (2009), 4 stars 3 stars, mystery/ fantasy

2010-reads, fantasy, kindle4pc, mystery, own, read

Here is my review from Goodreads: This was riveting & a good read. I don't have a bookshelf for medical fantasy, but it is. The good doctor reminded me of Dr. Who.

I should wait to review the books I read. While I liked this book & think the story is great, there were things I didn't care for. OK, so I'm a prude, but I did not like the sexual innuendos. I don't know if I'll ever be able to enjoy a KitKat again without thinking of this book. I don't even know if I should mention the language, I've heard worse. The constant "domestic squabbles" wore me down. The characters seemed one-dimensional. Such as she's discussing her "case" at a counter in a café. They were sitting at the counter because it was too busy for a table or a booth, yet I got the feeling there was no one around them.

Spinal Muscular Atrophy (SMA) is a real disease, a terminal one. The details were portrayed accurately. I like the way the author wrapped his story around those details. I like the way he is using proceeds from this book to go toward research for SMA.

OK, back to the blog.  I originally gave this book 4 stars. But, perhaps the fact that I'm reading my scriptures again has made me a little more sensitive to the language & such. I struggled in writing my review last night. I should have just given up & waited til morning. I lay in bed this morning, still thinking about the book. I decided I'd been too generous on my rating. I wrote what I didn't like about it on an index card so I wouldn't forget by the time I got to the computer to make my observations.

Thursday, February 25, 2010

Another chance for SMA

I follow several blogs, one of them is the Gwendolyn Strong Foundation. I've blogged about Gwendolyn & spinal muscular atrophy (SMA), the wicked disease she has. Now there is another chance to raise more money for SMA research






Tomorrow, February 26th, is the LAST DAY to vote for Gwendolyn's mother Victoria Strong as Hero Next Door. Victoria says it much better than I can:

Please, please take a few minutes today to help us reach first place and win $5,000 -- all of which will go toward SMA research and awareness. I know many of you have already voted and I want you to know how much it means to me to see your vote, to see the wall postings on Facebook, to see people tweeting the link and rallying for us. I can't do anything to stop SMA from ravaging my sweet baby's body. Raising money to fight for a cure is all I can do. So thank you for fighting with me!!! It truly helps.

Friday, January 29, 2010

Gwendolyn Strong Foundation placed

OMG, I didn't realize that I hadn't reported on how the Gwendolyn Strong Foundation placed in the Community Giving campaign on Facebook. I did on the Bipolar Kids message board on Jan. 25:
OK, we've been following this for the past 10 days. Today, I checked out the leaderboard on Chase Giving again.

We have some excellent news!! although none of our favorite charities won the $1 million dollars, Gwendolyn Strong Foundation did win $100k!! Numbers 7 through 100 won $25k! So, that means Ehlers-Danlos, National Autism Assoc., Pancreatic Cancer!! The Chase Community Advisory Board picked another 17 charities to win even more dollars. Six more charities won $100k and 11 more won $37k.

So, my dear friends, thank you for putting up with my crusading, thank you even more for participating in the voting.

I came over to Blogspot to check on Jonah, Gwendolyn, & the other blogs I follow. This is a nightly routine. Just before I go to bed, I check the blogs. Tonight I found a comment from Kristen, a lady who lost a baby to SMA, on my blog. I answered her & then went to check her blog to see what I had said. I read more of her entries, found another blog from her blog about a family losing twins, a boy named Nicholas, & a girl, Olivia. I had to check that blog too.

I heard the clock chime, & I, thinking it was 1 a.m., checked the computer clock. It was 2!!!!!!!!! It couldn't be, I just started this journey. I bookmarked Georgia's Journey, & now it's almost 2:30 & I have to work tomorrow & I should've been in bed hours ago!!

Kristen posted this on her blog about the Facebook Chase Community Giving & SMA being in 6th place:
I know that some of you are probably annoyed but think about it this way. Autism has Jim Carey and Jenny McCarthy. They have books, millions of dollars of research, treatment and 'cures'. Their victims are out in the community getting noticed. Our children remain silent for the most part. We have no celebrities and no treatments. All that we are left with is manpower and hope.
So, I answered: 
Autism has Jim Carey and Jenny McCarthy. They have books, millions of dollars of research, treatment and 'cures'. Their victims are out in the community getting noticed. Our children remain silent for the most part.

This is said so much better than I could ever have said it. Which is exactly why I DID NOT vote for autism awareness, even though my 22-yo son has Asperger's. I did not want to jeopardize the Gwendolyn Strong Foundation.

I am saddened to read about your sweet Georgia.
No, I didn't vote for autism awareness. I did not want to jeopardize the Gwendolyn Strong Foundation. These babies are DYING!! Besides, the research for SMA will benefit other diseases such as Parkinson's which is what my father had. And ALS/Lou Gehrig's disease which is what Bob Marshall, a former owner of The Citizen, died of. These diseases are cruel. Polio was eradicated, why can't these diseases be eradicated?

Now, it's 2:52 & I'm not very coherent. I hope this post makes sense.

Friday, January 15, 2010

Vote for Gwendolyn Strong Foundation

Chase Community Giving is donating $5,000,000 to charities around the USA. Facebook users are voting for the recipients! Round 2 of the voting is open. Please vote for Spinal Muscular Atrophy or SMA. Number 1 genetic killer of children under the age of 2. This research will help Parkinson's, ALS/Lou Gehrig's disease, spinal cord injury & many others.

Right now we are in #4 position out of 100. Bill, Gwendolyn's father, posted this on their blog: 

One thing is for certain -- $1 Million means more to SMA than to any other cause. SMA is vastly underfunded yet research is on the verge of changing science FOREVER and $1 Million WILL make a difference. SMA parents fundraise relentlessly under unfathomably challenging circumstances, but we simply can't whip up $1 Million on a whim. But, we can NOW!

If you are a Facebook member, please take this opportunity to vote for SMA. There is a button in the sidebar here on my blog that you can click to take you right to the page, once you have logged into Facebook.

I have been following the Gwendolyn Strong blog for several months. Most children don't make it to their 2nd birthday. Gwendolyn turned 2 in October. She has already beat those odds. 
Every second of every day we operate on a ridiculously high level of anxiety, alertness, awareness, and readiness -- even when Gwendolyn is perfectly healthy. We have to, as she can literally plug and stop breathing, as she has several times over the last few weeks and countless times over the last two years, at any second with zero warning, no signs, and no way to tell us (we literally have to be watching her 24/7). And when we see even the slightest signs of change in anything, and I mean absolutely anything, it sends us into a new stress galaxy altogether.
Posted by Bill, Sept. 12, 2009

On another note, I finished "A" is for Alibi. If you are following my blog & all of a sudden the entry with all the tickers for my reading challenge for 2010 comes up, it's because I couldn't remember the password for the Alphabetically by Title ticker, argh, so I had to make a new one & repost it.

My next book is a biography about Jessica Lynch, the young soldier who was held prisoner in 2003, I Am a Soldier Too.

Sunday, November 22, 2009

A quick note

I can't believe it's been over a week since I posted a blog entry. I've been depressed. Money is an issue & it seems like I'm being pushed into spending money on Disneyland that we don't have. Our sweet Don-Mike is reaching deep into his pocket & paying the majority of it. The Lord is helping with this venture too, by sending money & help from unexpected sources :)

On another note, this is the main reason I wanted to make an entry tonight:
It is working! With collective efforts, PetitionToCureSMA.com is growing -- and quickly. In less than a week it has blown past 77,000 supporters! This is awesome! And, as this petition grows it is not only sending a strong message to Congress, it is raising awareness of SMA. And knowledge brings change!
A blog I follow, Gwendolyn Strong, is about a little girl with SMA. She has turned 2, something most children with SMA do not do. I cannot believe I have not blogged about her before.