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.

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.

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.

Tuesday, Dec. 1

We made it home last night about 8 p.m. A day later than we planned. We spent a day longer at Disneyland than we had planned, but we're home! Mother did not come home in a coffin!! Woo hoo!! She's awfully tired, but you can't keep her down.

She almost had all of their laundry, hers & Don-Mike's, done & stuff put away when I got to her place this afternoon about 2:30. I, on the other hand, unpacked a suitcase. Before we could wash anything we had to get a bag of laundry soap.

I've caught up on Jonah, Sheila, Angela & Gwendolyn. It didn't look like anyone else had posted on their blogs in the last week. I also caught up on Facebook, but that wasn't horrendous, as I've been doing that sporadically this week.

I took my laptop with us, but the internet was always SOOOOOO slow. The only thing I could access was Facebook, so I was glad to check on that every day. Sunday night Nick & Don hogged the laptop. I was too tired & upset to fight for any time. I read.