Donation to FSMA

We are excited to announce that last month, The Miller McNeil Woodruff Foundation made a $10,000 donation to FSMA.  This donation will help fund the $160,000 basic research grant that FSMA awarded Dr. Henderson of Columbia University:

Newly Funded Spinal Muscular Atrophy Researcher Profile at Families of SMA: Dr. Christopher Henderson.

November 7, 2011.

Dr. Henderson is a Professor at Columbia University and has been awarded a basic research grant for $160,000 from Families of SMA.

Who are you?
I am a neuroscientist interested in motor neurons, what allows them to develop normally and what triggers their degeneration in diseases like SMA and ALS. Click here to see the Henderson lab website.

How did you first become involved with SMA research?
When I was still a postdoctoral fellow in Paris, France, I collaborated with Dr. Michel Fardeau, one of the real experts on the disease. We showed in 1987 that muscle biopsies from SMA patients – which were then taken routinely for diagnosis – contain factors that prevent nerve regrowth.  This was my first introduction to working with clinicians to understand disease mechanisms and I have tried to continue ever since.

What is your current role in SMA research?
My lab focuses on defining potential therapeutic targets in SMA.  This requires studying the disease process in mouse models and attempting to define molecular events that, when prevented, will confer benefit. My recent partnership with Dr. Hynek Wichterle in co-directing the Project A.L.S Laboratory for Stem Cell Research, and our collaboration with Dr. Kevin Eggan at Harvard, has given us access to human motor neurons with the same genetic makeup as the patients. I am also one of the co-directors of the Motor Neuron Center at Columbia University, which brings together 40 groups working on motor neuron biology and disease, and which houses 15 groups working directly on SMA.

Description of FSMA-funded project.
Stem Cell Models of SMA:  Molecular and Cellular Mechanisms, $160,000 for 2 years.
Objective:  One of the main challenges in understanding SMA is determining how the lack of a precise protein, SMN, found in all the cells of the body primarily affects motor neurons.  The objective of this project is to establish and characterize human cellular models of the disease “in a dish” and to use these models to determine the molecular pathways affected.
Research Strategy: This team will develop unique new tools, using human stem cells carrying the genetic mutation responsible for SMA, which can be differentiated in vitro into any kind of specific cell type of the human organism.  In this case, they will be turned into motor neurons. They will be used to generate a series of SMA motor neurons with differing levels of SMN protein and then characterized both at the morphological and molecular level, in order to better understand the pathological of the disease.   Thus the project will generate a highly valuable set of tools for studies of SMA pathology in a dish.
Significance of Project:  Even though the biological cause of SMA in humans has been identified and animal models of the disease have been developed, remarkably little is known about the cellular and molecular mechanisms that lead to the specific loss of motor neurons in the human patients.  The use of this unique set of tools will help us to answer these questions and to lead to new targets for therapeutic strategies for SMA.

Little Stinker

These videos are pretty uneventful, because Cole refuses to say ANYTHING, but I still think they are precious!  They capture some of his expressions that I want to remember forever.  And just for the record, he tells me he loves me ALL.THE.TIME!  He was just being shy and/or hard headed here…..

Donation to Arkansas Children's Hospital

Because of our many supporters, The Miller McNeil Woodruff Foundation was able to make a $15,000 donation to Arkansas Children's Hospital. We requested that the money be put towards funding of the South Wing Project. With this donation, they will name one of the Nutrition Rooms in memory of Miller:)!

During our stay at ACH, the construction of this facility was our "view". We got to watch them work long and hard hours for a full week:). I can't wait to see the finished product! I know it is going to be amazing!

For a tour of the South Wing, click the link below.....

South Wing Pediatric Hospital in Arkansas

Following in his daddy’s footsteps?

Look at this precious uniform that Nana and Papa gave Cole for Christmas.  It has his daddy’s old Razorback Baseball number on the back and the /\/\/\/\/\ with a moon on the sleeve.  According to Cole, Miller is in the moon, so Nana thought it was appropriate to incorporate it somehow:). 

Speaking of Miller being in the moon…….Before Miller passed away, I never noticed the moon being out in the middle of the day.  Now, I see it in the middle of the afternoon all.the.time!!!  I’m sure it’s always been there, but it’s just crazy for me to look up at 1:00 in the afternoon while I’m driving down the road and see the moon out.  When Cole sees it out in the daytime, he says “Silly, Miller!  You’re supposed to be sleeping!”.  So sweet:)…….

Halftime Entertainment

Miller’s going to the Cotton Bowl

Woooooooo Pig Sooooie!!!  We are ready to CALL.THOSE.HOGS…….

Arkansas Children’s Hospital ad

Our friends, Brent and Susan Robinson, at Fly-N-Hog Media have donated 1 year of ad space to Arkansas Children’s Hospital in memory of Miller.  This is their first ad to run, and it is running statewide.  We are so thankful for Brent and Susan’s generosity!  This is something outside of the box that nobody else can offer to help keep Miller’s legacy alive.  We LOVE when we hear from our friends/family that have seen little Miller around town, so be looking for him, and let us know when he pops up to say “hi”…….

Millerisms….

*This isn’t really a “Millerism”, but I wanted to share it anyway:).  My friend Lisa sent this to me the other night and I love it…..

*My friend, Whitney, posted this picture on Facebook:

Always thinking of my little guy!! I love you Miller McNeil!! I'm with Miller {/\/\/\/\/\}

*My friend, Courtney, sent me this text:

“A continuous Miller sign!  Ellie, Lucy and some other girls got their nails done today and the nail girl had them do this pose for a pic!  A few extra points but I thought of Miller!!”

*My friend, Anne, posted this on Facebook:

“Saw this and thought of you guys. It was a gift my in laws got for Christmas - one of those last name plaques where the letters are made of pictures. This is the first "letter".”

*My friend, Emily, sent me this text while she was out shoe shopping:

“Perfect for Patrick, right?!  LOL.  Just kidding.  Hey, anything in the name of Miller!”

*Our friend, Hillary, text Patrick this picture:

“Look who said hi out at the cabin:)”

*My dad called me the other day on my way to work to tell me about these shoes he had found on Cabela’s website that he was going to order for himself and he thought Patrick might like a pair too.  I told him that when I got to the office I would check them out and possibly get a pair for Patrick.  Well, before I could call him back, he called me back and said “Well, I realized why I like these shoes so much.  When you get on the website and look at them, check out their soles.”  Needless to say, I bought a pair.  I don’t know if Patrick will ever wear them, but we will own them

*This isn’t really a “Millerism”, but it’s a story that I want to share.  I received this email from Michele, who contacted us through the website to get some Miller hats…..

“…..I grew up in Rogers and have since moved to Virginia but I try to read your blog whenever I get the chance after we learned of Miller through friends back home.  Anyway, I have a really good friend here that I shared your story with recently as she had just lost someone in her life.  I showed her your blog that you had written about why God takes some people very young.  When she saw the monogram emblem you use for Miller's story the first thing she said was that it looked like a heartbeat on a heart monitor.  She said, "His heart still beats through them and all they are doing in his memory".  I thought that was so awesome!  She has since shared his story with others as well...so your little guy is continuing to touch people all over the country.”

*My friend, Emily, sent me this email-

“Shopping on etsy and saw this and thought of you and Miller :)”

*My friend, Jayme, and I were talking on the phone the other day and “Miller” showed up on her TV…..

“This was the scene that came on while we were talking on the phone.  Gave me chills!”

*Jayme also sent me this email-

“Saw this on pinterest. Hello miller :)”

(look in the bottom left hand corner)…..

*My friend, Jody, posted this on Facebook:

“Zacks poo bear blanket, it's with miller.”

*Our friend, Brittney, posted this on Facebook:

“My sister just tried this dress on & I yelled "MILLER"! Ha :)”

*Our friend, Nancee, sent Patrick this text:

“Miller was with us while looking as Christmas lights in TX.  Of all the times I’ve driven on that street, this was the first time I actually looked at the street name.?”

*My friend, Stacey, shared this picture on my Facebook wall.  You can get it at Ember in Little Rock.

*My friend, Haley, sent me this Facebook message:

Ok so I just had to share...

Kyle and I went to the movies yesterday with the kiddos and the car in front of us had an I'm with Miller sticker on the back. The song on the radio was Elton John "Candle in the wind" and the part of the chorus "You're candle's burned out long before your legend ever will" just covered me in chills. Right before we parked I pointed it out to Kyle and he said, "I know, I'm thinking the same thing."

 
Miller has impacted the Nicodemus family just like he has everyone else and what an unbelievably precious little boy he is! I seriously think about him every day when I look at Porter. Knowing Miller has made me stop and enjoy the moment every. single. day.

 
I hope you continue to be blessed in 2012 and I know God has big plans for your sweet family!

Praying for y'all!! xoxo

Hog Hoops

We went to another Razorback basketball game.  Beforehand, we had our usual dinner at Bariola’s.  Cole LOVES playing in their game room:)…..

Ms. Carmen always brings Cole treats.  Usually it’s a Tootsie Pop, but tonight she bought him Dippin Dots!  He has never had Dippin Dots before, so he was in heaven……

Blake Eddins commentating the game in his Miller band…..

The most INTENSE Hog Call E.V.E.R……..

Last Soccer Game

Happy New Year

I stole this blog post from my friend, Kate.  She has such a way with words.  Thank you, Kate for sharing your heart:)…….

What i have learned this year......

you don't have to be president of the united states to change lives.

you don't have to be a preacher to tell people about Jesus.

you don't have to be here long to teach people about love, faith and joy.

and you don't ever know what tomorrow will bring so thank god for your day. everyday.

i've learned and SEEN the strength that comes with love and a solid faith...and how the foundation of that faith is your gratitude.

i've learned there are so many ways to be grateful and to express it.

There is nothing so time critical that you can't stop and play with your kids for 10 minutes

i've learned you have to turn off work. really. unplug it and put it away so it won't look at you.

you can never say i love you too much

find things that make you happy. do them.

i've learned that i like to travel but i like coming home just as much

i've learned that friends are my fuel. friends are my life lines. They bring me so much joy.

i've learned that you are NEVER to old to call home every single day. multiple times a day. call home so much so that when your dad answers the phone he says "what now?" ;)

i've learned family is everything. everything.

i've learned that my husband can make me belly laugh. but only if he hasn't done anything annoying that day. just kidding jason, love ya ;)

i've learned that i am a better parent with him by my side. you just can't do it alone. well, or you shouldn't have to. ;)

i've learned he doesn't like to unload the dishwasher. only likes to load. and i am thankful for loaded dishwashers.

i've learned that paper plates give you more time to play and less time at the sink.

i've learned you must find the joy and power in the everyday, ordinary, and ultimately magical moments of childhood and parenthood.

i've learned that when it rains..go jump in puddles. when it seems the sun doesn't sleep. turn on the sprinklers and pretend it is raining

i've learned to cherish uneventful days that start with pancakes and end with snuggles.

i've learned to document birthday cakes but to hold on to the little memories that almost don't get photographed

i've learned that if you don't clean up the spilled Cheerios immediately they quickly turn into cement on the table. cement. somewhat of a cheerio fossil.

i've learned to give nose kisses and butterfly kisses and hair kisses and eyebrow kisses and elbow kisses. all the things you can think of to keep your momma in your bed just a few more seconds.

and i've learned that laying in the bed to get more snuggles even when you know what they are doing is just fine.

i've learned that the nights we fail to carry our children back to their own bed doesn't mean they will sleep with us forever.

I've learned that how children view their faith is magical. They believe. they believe in the place called heaven.

 
i've learned to be thankful for bathtime because there will be a time in their lives where they take showers in the mornings and don't need me on my knees to help wash their hair and wrap them in a towel cocoon and take them to "lotion station"

i've learned to savor every moment. especially those moments where we are all piled on the couch....watching the 100th episode of spongebob square pants.

i've learned to always say, How can i do this better.

i've learned to keep learning.  to push yourself

Thank you for the gifts this year. They came wrapped in joy, trust, comfort, strength, hope, faith and love.