Friday, October 19, 2012

Children's Champions


THIS SUNDAY October 22, 2102, WE NEED YOUR HELP & SUPPORT! 

Would you help if you knew you could save lives? Here is your chance to bring a MIRACLE to LIFE! 

Madison's aunts, cousins and even second cousins are running in the Nationwide Children's Hospital Marathon and they need a BIG PUSH to get to the finish line! They've got inspiration from Madison and all the SMA kids but they need that extra pixie dust to help their efforts save these kids!

Praying we can reach our goal of $10,000! All money goes DIRECT to Dr. Kaspar who is waiting on FDA approval to bring his SMA Gene Replacement Therapy to these children! DONATE NOW: http://www.nationwidechildrens.org.kintera.org/faf/search/searchTeamPart.asp?ievent=1011247&lis=1&kntae1011247=E42D38520DFE4173A3080D1594C8C5E0&supId=0&team=5101628&cj=Y

JOIN THE TEAM! BE A CHAMPION! PLEASE SPREAD THE WORD!


                                     
                                             http://miracleformadison.blogspot.com/

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Wednesday, June 20, 2012

Disney Princess 1/2 Marathon Feb. 2012 UPDATE


To CELEBRATE Madison's Super Miraculous Achievement; turning 15 years old, we traveled to the happiest place on earth- Walt Disney World! Madison had so much fun and didn't want to come back home. Her next big adventure is attending another Big Time Rush concert on July 5th and meeting her favorite boys for the 4th time. Please continue your prayers for her health to remain stable so she can attend this concert.



Madison's Aunt Michelle ran in the Disney Princess Half Marathon while we were there. Please read below Michelle's own account of her training and experience:

"This past Feb. 26 2012, I entered the Disney Princess Half Marathon to Run 4 A Miracle - Cure SMA.  Words can not describe the feeling or feelings I had as I ran and walked 13.1 miles from Epcot to the Magic Kingdom and back! It was truly magical as I felt the wings of So Many Angels carry me to the finish line!

 I trained for 14 months - doing the Galloway beginner half marathon training program I think 3 times and group core and strength training one day a week with my guy Rick at Premier. I mixed up two other days with a light bike workout and kettlebell program.   At first I really did not get the run/walk, so I made up run walks just to get me to 6 miles.  Then by accident or fate - fate for sure- I came across a video of the Galloway run/walk -- ok I got it now!!!  So I finally got comfortable doing the run/walk - 4/1 was my goal.  It finally all clicked into place the last 3 months when 80% of my training runs felt good to great.  You know what they say about the other 20% - they are the ones that either hurt or make you want to just puke and leave that psychic mark in your mind - why am I doing this?

I did no short races like a 5k or even a 10K - my goal was to make this as tough as possible and to be in the unknown -- just like SMA.  Total cold turkey.  My last big run was the Sunday before the race.  We were leaving Tuesday for the two day road trip down.  On Thursday morning I needed to get at least a 30 minute run in and the weather was already up in the 70's.  I walked to the small fitness center at the rental house resort we stayed in - did a 30 minute motor memory run treadmill run - then ran back to the house.  I felt pretty good about things especially since the next three days we would be walking Disney theme parks for a good 2- 3 hours.  I was praying for cool weather for Sunday, because the three days before were in the 70's, and it happened -- it was 55 and cloudy with a touch of misty rain.  Thank you Lord.

Wake up was at 2:30 am  leaving the house with Fran at 3 am.  You had to be at the park no later than 4 am if you were driving because they begin to close the roads leading into Epcot and the Magic Kingdom.  I think all the moons were aligned - we ended up with a sweet parking space, walk to the staging area was short and sweet.  Once there, we checked out a few places especially the CHEAR fan area.  I had to be in my corral no later than 5 am - so I headed on over to it around 4:30 am.  Wow - I've  never seen so many port-a-pottys in my life!  The walk was a good 20 minutes, due to trying to get around those standing in line to take the last pee or poop to the crowd of over 20,000 heading to their corral.

I was in the second to the last corral G.  I found a spot and waited for the big show.  They had a big screen TV so you could hear ( not well ) but see as all the corrals were started by the Fairy Godmother and a round of - yep you guessed it - FIREWORKS.  So as each corral in front of me left I moved up until I was in the start area.  Yep - the Fairy Godmother did the countdown and the Fireworks went off -- and so did my corral.  I started out walking -on the right side like you are suppose to - then I saw the family and friends on the left side so i decided to JOG and look to see if I could see Fran -- no Fran and if she was there I could not see her because it was too dark.  So I was still jogging to the first water station 1.5 mile - goal was to walk all water stations -- got through that one so I began to jog again not really thinking. I just did that to the next water station 1.5 mile again.  I walked through the station again and began to jog a little then looked at my watch and saw it was not 7 am yet ( oh my corral was to leave at 6:21am but I think we left a little later).  I realized I just ran- ok- jogged but I think it was a run cuz I did each mile in like 10 something.  Which I did not plan on so I decided I was going to do my run walk the rest of the way.  As I slowed to walk - I was next to a lady who looked to be by herself so I said hi and how are you doing?  Turns out she was by herself as her friend had a sprained ankle and dropped out.  She was beginning to get a blister on her foot -so i asked her if she wanted any company.  So we walked ran the rest of the race about 8 miles.
My goal was to finish so I was not in a hurry to make some record time and then be dead the next day.  And the time went faster with a new friend. I felt great the whole time - as if i could have JOGGED the whole thing ( which I am glad I did not).  Or even did my run walk - 4/1.

We passed through the Magic Kingdom toll booth heading to the Contemporary then the back way to Main Street USA and the Castle is in front of you.  How cool is that!!! Way cool!!!!  Right turn to Tomorrowland past Space Mountain, The Tea Cups and around the corner to the back of the Castle.  The Trumpeter tooted a royal toot as you ran through the Castle and out the front and down to Liberty Bridge.  Then I saw Jan at the 6 mile area - I gave her a sweaty hug and off to Frontierland.  I was hoping the turkey leg stand was open but no luck there.  Good thing I had one the night before.  We then pass Splash Mountain heading towards the back lot of Adventureland which takes us to the road to the Grand Floridian and back to World Drive.  At the 8 mile mark we get GU -- yummo!!  I milked my three GUs for the next mile.  Next thing you know it we are at mile 10-11 the big clover leaf exit ramp back to Epcot.  WOW what a ramp -- it was banked and it was elevated - the most elevation you can get on the mostly flat course.  Your left buttock cheek was feeling it now.  Then there is mile 12 - Epcot, the golf ball, the water fountain to showcase bridge- then turn around and see it all again.  Now you are getting to the finish line which is again taking us to the back cove of Disney productions ( only where the eyes of cast member are to see) - AND THEN there it is the finish line-1 mile to go!

It took me 3 hours & 24 minutes to do but it was the best 3+ hours of my life!  I  crossed the finish line, got my princess medal, took a photo op with it, walked around and was thinking -- I did it -- after 14 months of training and a 3 hour tour of Disney World - I did it and felt great!!!


I am glad I did no runs before this and I am glad I trained the way I did.  I do not think I would have felt a great accomplishment if I had done a few races before this.  Defeating the unknown is the most rewarding feeling ever. Oh - and staying with keeping it as hard as possible - I did the Princess in shoes I did not train in!! I bought a pair of Brooks two weeks before the race.  However, I tried them on 4 times before buying them. The UNKNOWN!!! Just like SMA!

In doing this run - it has made me want to continue a journey to Run to help Cure SMA.
So because of the Princess Run I am going to BE A CHAMPION and run in The Nationwide Children's Hospital Half Marathon on Oct 21, 2012 -- RUN 4 A MIRACLE CURE SMA.

Remember I did my first ever road race at the Disney Princess Half Marathon Feb. 26 2012. After that unbelievable experience - I have decided to add more to my list - so before the Columbus Half Marathon - I will be doing the Color Run, Dublin Emerald Run, Columbus Ruckus and the Hell Run (going for the SuperWomans Cape).

 If you plan on doing the Nationwide's Children's Columbus Marathon and DO NOT HAVE A CAUSE to run 4 then join my team and RUN 4 Madison's Angels Cure4SMA.
Please DONATE to SMA Gene Therapy Research at Dr. Brian Kaspar's Lab  Madison's Angels Cure4SMA

YOU CAN JOIN MY TEAM- all you have to do is go to Madison's Angels Cure4SMA  and hit the link JOIN MY TEAM. You will raise awareness and funds for SMA Research. You can do this the REAL way by entering the Columbus Marathon and joining me on the streets of downtown Columbus or the VIRTUAL way by running or walking in YOUR city (if not Columbus) or running or walking in your Columbus neighborhood -- mileage of your choice.

Remember SMA or SPINAL MUSCULAR ATROPHY is the #1 genetic killer of children under 2.
7 million Americans or 1:35 people UNKNOWINGLY carry the SMA gene.
SMA is untreatable, under funded, incurable and FATAL.  

Columbus HAS the TOP 2 SMA Research Teams in the world at The Ohio State University and The Research Institute at Nationwide Children's Hospital."- Michelle Worrellia

                                             
                                               http://miracleformadison.blogspot.com/


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Friday, February 17, 2012

SMA Awareness Angel Doll & Run4a Miracle



Tattered Rags doll maker Jodi Cain has created this one of a kind handmade SMA Awareness Angel doll in honor of one of our SMA Friends in the Fight- Miss Skyler McAdams. You have an opportunity to WIN this beautiful doll, spread SMA awareness and help fund a MIRACLE! 3 chances to win with every $5 donation. 100% will go towards funding the SMA Gene Replacement Program at Nationwide Children's Research Institute and The Ohio State University.
 Skyler will be drawing the winning name on March 7th.

Make your donation and chance to win here




The Disney Princess 1/2 marathon which takes place on February 26th, 2012 is the kick off for Run4aMiracle. Michelle Worrellia- AKA Madison's Aunt Shell, will set the pace for Team Miracle and release her inner princess when she runs for Madison and all those with SMA.

Please consider making a $15 donation in honor of Madison's 15th Special Miraculous Achievement and help Michelle carry all the SMA Princesses and Princes over the finish line.

Donate here




If you would like to mail in your donation for the raffle or the run please make your check payable to:
Dr. Brian Kaspar SMA Gene Research
and mail to:
 MFM&F
6166 Enke Ct.
Dublin, Ohio 43017

THANK YOU so much to all those who have sent Madison birthday cards, gifts and donations! She has been through a very difficult time this past year with the loss of some movement and weakness. Your support really helps lift her spirits and helps her to keep fighting. Please continue your prayers and support. It's the only way for us to get through this.

"Many nights we pray
With no proof anyone could hear
Though hope is frail
It's hard to kill
Who knows what MIRACLES you can achieve
When you BELIEVE..."
- When You Believe by Whitney Houston

                                                      http://miracleformadison.blogspot.com/


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Sunday, February 5, 2012

Madison turns 15- Run4aMiracle










15 years ago we were blessed with a beautiful gift from God! 8 months later we found out that this special gift was an Angel and that she would only be with us for a very short time. Our little Angel just turned 15 years old- a Super Miraculous Achievement!

Please help us celebrate and put an end to SMA so that no other family has to experience living with SMA! 
Consider donating at least $15  ($1 for every year of Madison’s life) to Run4a Miracle!



We have joined together with several other SMA families and SMA organizations to help accelerate forward the very promising SMA Gene Replacement Therapy at Nationwide Children’s Research Institute. They are right on track to bring this miracle to human clinical trial this year. 
Right here in Columbus, Ohio we have the opportunity to help eradicate SMA! 

HAPPY 15th BIRTHDAY MADISON ROSE REED!
We LOVE you!

http://miracleformadison.blogspot.com/
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Monday, December 12, 2011

SMA Online Fundraiser







Shop online for all your AVON favorites and help support Spinal Muscular Atrophy
Research at Nationwide Children's Research Institute and The Ohio State University 
SMA Gene therapy program.
Order now:
http://ycastro.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=192732

Please enter the promotional code: Miracle4Madison
at the END of your transaction.



If you would like to make a direct donation to this promising research please
consider donating directly towards Run4aMiracle Event- raising SMA awareness at
the Disney Princess 1/2 marathon Feb 26th, 2012:

https://giving.nationwidechildrens.org/miracle4madison

Thank you for your continued support to fight & CURE SMA!


http://miracleformadison.blogspot.com/
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Saturday, August 13, 2011

August is SMA Awareness Month

Today is SMA WORLDWIDE candle lighting day. Please take some time this evening at 8PM wherever you are to light a candle or hold up your cell phone and remember all those angels lost to this horrible disease and honor those warriors who continue to fight it!
Believe in miracles!
New SMA research update published in Nature Magazine reports the continued progress with the AAV9 gene replacement therapy that is being done right here at Nationwide Children's Research Institute and OSU.
You can read the article here!
Dr. Brian Kaspar is getting closer towards that Miracle for Madison and ALL her SMA friends! Thanks to several SMA nonprofits the gene therapy is moving forward at an incredible pace but many children are still suffering and dying from this horrible disease. PLEASE help us spread the word. Another $500,000 is NEEDED to get this into human clinical trial. if all continues to go well it will happen in early 2012!
THANK YOU Families of Spinal Muscular Atrophy (FSMA), Spinal Muscular Atrophy - Fight SMA, Sophia's Cure Foundation and Gwendolyn Strong Foundation and ALL the SMA Families working so hard to push this into a reality for our kids!
YOU can be part of a MIRACLE right now!
Please direct ALL donations directly to:
Dr. Brian Kaspar SMA Research
mail :
c/o Miracle for Madison SMA Research
6166 Enke Ct.

Sunday, June 12, 2011

SMA Angels in the Outfield


In honor of our SMA friend in the fight Adyn Bucher!

Let's play ball and knock out SMA!

Please join us on Sunday July 3rd, 2011 at 1PM in Cincinnati to watch an exciting baseball game between the Cincinnati Reds and the Cleveland Indians.

Tickets are $24 each and $8 will be donated to SMA Research!
Tickets must be purchased by wednesday June 15!
Please contact Tom J. at sma.reds.indians@gmail.com or order now online.

Makes a great Fathers Day or Graduation gift! 
 
http://miracleformadison.blogspot.com/ 



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Thursday, April 28, 2011

OKI Walk-N-Roll fundraiser


The OKI Walk-N-Roll in Cincinnati is this coming Saturday, April 30th 8:30AM-12:00PM at Xavier University's Cintas Center. The speakers which include our very own SMA Neurologist Dr. John Kissel start at 9:30 am and the walk starts at 10 am. Join in the fun! Even if you can't attend please consider making a donation or buy some raffle tickets. If you have any questions, please contact Beth Lockwood at 513-753-8222 or bethml@fuse.net.
Make a donation, purchase raffle tickets and view raffle prizes including an IPAD with accessories online !
 
http://miracleformadison.blogspot.com/ 

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Monday, April 18, 2011

Spinal Muscular Atrophy- A Timely Review



Please read this very informative article titled: Spinal Muscular Atrophy - A Timely Review written by our very own Dr. John Kissel and Dr. Stephen Kolb from The Ohio State University. This article details the history of SMA and where we are today up until the most recent published reports.

There has been remarkable progress made towards a cure in recent years. We are on the verge of making that a reality. With your continued help and support we believe there will be a Miracle For Madison & her friends very soon. However, we can't do it without you. We are looking for individuals, families, groups, organizations and corporations to join together to help us and many other families to raise $1 million in the next year to get the very promising Gene Replacement Therapy into human clinical trial within a year. We have the opportunity to eradicate SMA!

Please contact us at miracleformadison1@mac.com if you are willing to help.
 
http://miracleformadison.blogspot.com/ 

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Friday, March 11, 2011

Happy 4th Birthday to Karah Barry- Our Friend in the Fight inspiration


Back in July we began a new feature called Friends in the Fight to spotlight other SMA children and their families in their fight with SMA and to help raise money for the gene therapy research at OSU and NCRI. Our inspiration and first featured friend Miss Karah Barry will turn 4 years old on March 27th. Karah has been through several hospitalizations and intubations this past year and keeps on showing how courageous and brave she is. She has an incredible amount of inner strength and passion for life! Happy 4th Birthday Karah! We wish you many many more birthdays and unbirthdays to come!

Birthdays are huge milestones for kids with SMA! Most children with SMA type 1 die by their second birthday! Karah along with Madison and another soon to be featured friend Nolan Shofner have asked in lieu of birthday gifts, for donations towards saving their life and the lives of their SMA friends. Please consider making an online tax deductible donation in honor or in memory of any SMA child on our secure site igive to OSU. We have the opportunity to save many lives here but even a miracle needs a little help. Thank you!

If you are an SMA family or SMA organization and would like to join us in raising funds to get this promising gene therapy to clinical trial in the next year, please contact us at miracleformadison1@mac.com to have your child or group featured.

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