Today was a HUGE day in the SMA community! Human clinical trials for gene therapy for SMA have been approved by the FDA!!! This is what our $87,000 donation to Families of SMA went to last year!!! Miller's supporters have helped make this happen and should be SO proud! This is one step closer to a CURE!!! It's going to happen, guys! It's going to happen:)!!!!!!
Patrick and I have recently had the pleasure of getting to know Alanny and her family. Alanny was diagnosed with SMA earlier this year and Dr. Balmakund at Arkansas Children’s Hospital made sure we connected with each other. You can tell by the picture below that she is absolutely full of life! This picture was taken right after she got her new walker. Precious baby girl, we are working hard every day to help make your life better and hopefully one day find a CURE for this devastating disease. The Woodruff’s are with Alanny:)…….
(Notice the picture of Miller they have framed in the background
Miss Mattie is busy, busy, busy these days! She especially loves reading books and taking everything off of the bookshelves;).
Cole got his teeth cleaned today. Good news is, he was VERY well behaved. Bad news is, he has a couple of cavities:(. All that candy and sugar this boy consumes finally caught up with us;)! At least they are baby teeth. Hopefully he (we) have learned our lesson and when his “big boy teeth” come in they will be nice and shiny;)…..
Showing off his Superman stickers he got for being so well behaved
Zach Hocker is with Miller today! If you are at the game or watching it on TV be sure to look for the Miller Band on his left wrist! Thanks, Bradley Hollis, for sharing Miller's story with Zach! You are such an inspiration, not only to those of us who have been affected by SMA, but to everyone you meet!
It’s that time of year again! We are knee deep in planning Cupcakes & Cocktails! If you or your business are interested in being a SPONSOR and/or an AUCTION DONOR, please email me at meredith@imwithmiller.com.
I attempt to get at least 1 video per month of each of the kiddos. Cole has gotten to the point where he gets shy when I video him so he quits performing once he sees the camera;). After Miller, I realized that it doesn’t have to be anything truly “video worthy” that you video, just to see their different mannerisms, facial expressions, and the sound of their voice is something I will treasure forever! That doesn’t mean I don’t TRY to get “video worth” videos, but after MANY failed attempts this month, this is what I ended up with;). Oh well, as Cole would say…”You get what you get and you don’t throw a fit!”……
Planting food plots and getting ready for deer season…..
Uncle Kirby helping Cole get the fertilizer out of his boots
Today we presented Dr. Gregory Sharp, Section Chief of Neurology at Arkansas Children’s Hospital, with $50,000 for the Miller McNeil Woodruff Endowment for Neuromuscular Disorders. This endowment began last year when we started the fund with $100,000.
The Endowment for Neuromuscular Disorders will help to diagnose, treat and promote research to improve the lives of children who have neuromuscular disorders. Since May 2013, funds in the endowment have been used to create an annual lectureship series in memory of Miller, which help recruit the most talented neuromuscular specialists to visit the hospital and to work with staff members on the care of children with these disorders.
Happy birthday to one of the sweetest girls and strongest mommas I know!
The smile on these 2 faces makes me so happy
Have you signed up to play in the 1st Annual Gusano's Open, benefiting The Miller McNeil Woodruff Foundation? It is going to be a GREAT time! We still have a few teams available in the morning flight and would love to have you join us! It will be at Shadow Valley Country Club on Friday September 27th. What a FUN way to kick off the AR vs. A&M weekend:)!!! Check out the attached registration form or call 479-631-3033 to speak with Ben Biesenthal or Wes Cooper for more information. THANK YOU to the ENTIRE Gusano's gang for the generous offer to organize this tournament for us! We are SO grateful for your continued support!!!
We came home from Hot Springs on Monday and went to a pool party at the Schmitz house. Always a fun time!
Patrick and Aaron with their baby girls:)…..
Best buddies
Worn out after a fun day in the sun!
Mattie and I loaded up and headed to Hot Springs for Labor Day weekend while the boys held down the fort at home. They went to the Razorback football game and spent some time at Artex. I foresee a lot of these boy weekend/girl weeknds in our future;). I asked Patrick to send me pictures of Cole throughout the weekend but he failed to do so, so all you get are pics from our “girl weekend” in Hot Springs…..
Mattie loved her cousin, Miles
And tummy tickles from Bobo’s head
Silly Miles
Sleepy girl getting some snuggles from Bud before bed…..
Mattie and her cousin, Aubrey, in their matching outfits
Feeling nautical
This series of pictures CRACKS.ME.UP!!!!!
I remember when Miller could no longer tolerate his car seat without his saturations dropping, we would have to hold him in the back seat on the way to doctors appointments. I was always so afraid of pulling up at a stoplight next to someone and them seeing him out of a car seat. I knew that without being able to see the oxygen in his nose and the pulse ox around his little foot that they would judge us as unfit parents. Sometimes I would cover him with a blanket so people couldn't see, and other days I dared someone to say something to me! This post is a powerful reminder that you should never judge others.......
Today The Miller McNeil Woodruff Foundation presented Circle of Life Hospice with a $25,000 donation! This donation will go towards the recently launched, Circle of Life Hospice Foundation. The purpose of this foundation in to help COL prepare for financial eventualities, such as maintenance for the inpatient hospice homes. The regular day to day and monthly maintenance is already incorporated into the budget, but this endowment fund will prevent the necessity of having to raise emergency funds when major maintenance is needed, such as replacing a roof. Part of what we loved so much about hospice was being able to go to the inpatient facility in Miller’s final hours. It is such a beautiful, peaceful place and this endowment will help insure the beauty is preserved forever! Thank you to all of our supporters who made this donation possible. As we always say, if it weren’t for YOU we wouldn’t have the funds to do Miller’s work. We are incredibly grateful…..
Big Brother and Baby Sister with Miller’s stone at Circle of Life Hospice House. Cole is so proud to be Miller’s big brother and we hope to teach Mattie all about Miller so she will be just as proud……
Our friends, Wes and Ella Shelton, lost their 14 month old son Taylor on June 15th to Sudden Unexplained Death in Childhood (SUDC). 
Please check out their website at www.taylormckeen.com to learn more about Taylor’s story and help support them in discovering the causes of SUDC.
While Mattie and I took a nap, Cole and Patrick decided to skip some rocks and find a few crawdads:)…..
