Thursday, February 10, 2022

Madison’s 25th Birthday

Celebrating 25 years of our beautiful rose…
Born innocent and pure of heart! Practically perfect in every way. Madison Rose’s beauty is evident. But every rose has it’s thorns. Her thorn is Spinal Muscular Atrophy type 1. The ability to bloom and grow despite this genetic flaw is what’s truly remarkable and a true miracle. With courage, inner strength, love, care and support she has continued to bloom and survive turning 25 years old on February 4th, 2022! Help us celebrate this miraculous milestone by wishing Madison a happy birthday and donating to further SMA research that will help treat Madison and the older SMA population:


Friday, May 20, 2016

Pre-order SMA Awareness Leggings

Can you help make Madison's fashion design dream come true please?
Only 21 more pre-orders needed! ( 9 pre-ordered so far) by June 1!
Pre-order here:

A wonderful and amazing friend Annette Vandendriessche founder of LBWear saw Madison's many outfit design's and her passion for fashion. She approached Madison with designing her own fabric. Madison does not have the physical ability to design something herself. So with the help of Annette's talented graphic designers a print was created with the inspiration and guidance from Madison. The fabric is soft and comfy! These are perfect for any adult or little girl and can be ordered in capri and/or full length.

Motivate and inspire! ‪
#‎CureSMA‬ ‪#‎fightSMA‬ ‪#‎SMAawarenessribbon‬ ‪#‎fighter‬ ‪#‎miracle‬ ‪#‎strength‬ ‪#‎believe‬ ‪#‎fightCureSMA‬ ‪#‎SMAstrong‬ ‪#‎courage‬



Wednesday, December 24, 2014

Merry Christmas!

Merry Christmas from our family to yours!
Thank you for your gift of friendship and support!
May God's blessings of peace, love, faith and hope be your gifts this Christmas season!
Continue to BELIEVE! ‪



Tuesday, December 23, 2014

SMA Awareness Ribbon Christmas Ornaments

Madison helped to make Christmas ornaments using the SMA Awareness ribbon as her inspiration to help spread more awareness during the holiday season. These are just an example of how you can use the SMA Awareness ribbon in your every day life to help spread more awareness of Spinal Muscular Atrophy. Share your ideas and pictures with us anytime and we will post them here on the blog and on our facebook pages.

Shop for SMA Awareness Ribbon merchandise here or more online through our zazzle store!



Monday, December 8, 2014

Made Local Marketplace Holiday Show To Benefit Miracle For Madison & Friends

JOIN US at Bridgewater Banquet and Conference Center this coming Saturday,  December 13th, 2014 from 9AM-4PM for the Made Local Marketplace Holiday Show. Shop for many awesome locally made products and a ton of OHIO and Buckeye merchandise. Proceeds will go to Miracle For Madison & Friends SMA Research at OSU fund! FREE entry at 9AM but you can purchase a VIP EARLY ENTRY pass (8:30AM) for $5 that all goes to our SMA research fund! Go here to purchase your VIP early shopper pass!

We will have a table set up to spread SMA awareness and to sell some items made by Madison herself! Come out for a fun filled day of shopping! Support local small businesses and help us spread SMA awareness and raise funds for a MIRACLE for Madison and her SMA friends!



Monday, December 1, 2014

Giving Tuesday

Tomorrow is #GivingTuesday! Please consider giving to this promising research for SMA and ALS through The Kaspar Lab. Team SMA Cured is only $614 away from reaching their $5000 goal!
Will you be #Unselfie and help them?
Click here and choose a runner to give to!
Thank you for your support and help in saving lives!

Please visit our facebook page often for the most up to date information and activities!



Saturday, August 16, 2014


Madison has a message and challenge to Kendall Schmidt, Heffron Drive: 

"Heffron Drive my disease SMA is almost exactly like ALS only it affects kids and is the #1 genetic killer of infants and toddlers. Emma L. and I have the worst form. We've lived longer than expected only because our parents decided to do things to help keep us alive. I challenge Heffron Drive and your families including Yuma to do the #SMAicebucketchallenge in 24 hours or donate $100 to here at i-give at OSU.

I can't pour ice water over my head or I would choke, get pneumonia and die ( I can't swallow and even a simple cold can kill me because all my muscles are weak due to SMA).
So instead I donated $100 to SMA Research at The Ohio State University- Burghes Lab.
The challenge is on!

Once you do this challenge everyone in the SMA community will buy your new album Happy Mistakes to thank you because SMA is a #happymistakes -..."they said that we'd never make it, but maybe we already did, we've been traveling a long road now, we've been giving all we have to give,...cause we got what we need and we're looking for a miracle, and we don't mind waiting, no we don't mind, looking for a miracle..."

Preorder Happy Mistakes album NOW by Heffron Drive on itunes !

#SMAawareness #SpinalMuscularAtrophy #ALSicebucketchallenge #SMAawarenessmonth #1killer 



Wednesday, January 1, 2014

Happy New Year 2014! (blog:

Wishing you all a wonderful new year full of love, smiles, good health, many blessings and miracles! Thank you always for your love, prayers and support! We are blessed to have you in our lives!

What a year 2013 was! Lets take a look back!

Madison turned Sweet 16 on February 4th, 2013! When she was diagnosed with SMA at 8 months of age, we never imagined that we would ever see this beautiful day!

We celebrated this miraculous milestone through out the year! You're only Sweet 16 once!
Her second celebration took place in Walt Disney World in late February! It was a very fun and magical trip! Madison couldn't wait to visit the new Fantasyland area and ride the new Ariel ride! She had been waiting 3 years for this! Her dream came true!
We had dinner at the new Be Our Guest restaurant for one magical birthday celebration! We sat in the West Wing. Our server remembered us from the year before when we had him as our server at the Kona Cafe in the Polynesian. We had the grey was delicious! Madison got to meet the Beast after dinner and he was so gentle, held her hand and gave her a kiss!

Aunt Michelle ran the Disney Princess half marathon for Madison and all the kids with SMA, raising money again for Dr. Brian Kaspar's SMA Gene Therapy program at Nationwide Children's Hospital!

Cinderella's Royal Table was another restaurant Madison wanted to celebrate her birthday at. The Ariel that was there that night also remembered Madison from the year before! Did you know that Ariel is Madison's favorite princess? She just wants to be... "Up where they walk, up where they run
Up where they stay all day in the sun Wanderin' free - wish I could be Part of that world".

                       To be continued- 2013...A Year in Review 


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