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/

http://miracleformadison.blogspot.com/

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.

Dublin, Ohio 43017 


http://miracleformadison.blogspot.com/ 

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/ 

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/ 

                                       

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/ 

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.

Research Update

Dr. Brian Kaspar from Nationwide Children's Research Institute began pre pre IND discussion with the FDA last week in regards to his promising Gene Replacement Therapy for SMA. His discussion with the FDA was very encouraging and plans continue to move forward towards a Miracle for Madison and all her SMA friends. Here is a quote from Dr. Kaspar himself:

“We had our first interaction with the Food and Drug Administration regarding our gene delivery program for Spinal Muscular Atrophy on Thursday, February 24th, 2011 in what is termed a pre-pre IND (Investigational New Drug Application). For this call, we presented pertinent information to the FDA regarding the status of our studies to date, which included pre-clinical efficacy and preliminary safety data. We were impressed with the thorough, thoughtful and expert review we received from the agency in which the FDA was positive regarding our program, providing guidance for moving our translational program forward. It is important to note that these discussions were informal and non-binding, but certainly provided positive direction for us to move towards human studies. Based on our conference call and review, we are planning to perform some further dosing and safety studies that will help guide the studies that will be required for our formal application. This was an important step in our program and we are excited to continue to advance the gene delivery program forward to the clinic.” ~ Dr. Brian Kaspar Ph.D.

Read the Columbus Dispatch article:
http://www.dispatch.com/live/content/...

We couldn't have gotten to this point without all of your support over the last 13 years! We can't stop now! It is estimated that this program will need another million dollars in funding despite all of the wonderful SMA organizations like Sophia's Cure, FSMA, FightSMA and Gwendolyn Strong Foundation who have jumped on board to help this past year.

Thank you and please continue your donations and prayers for this research and for the children living everyday with this disease.

Madison's 14th birthday!

Madison had a Big Time 14th birthday!!!!!!!
Madison has asked that instead of gifts she would like donations made to help find a cure for SMA. She raised $1766 on facebook. Donations can be made directly to our fund here:
https://www.giveto.osu.edu/igive/OnlineGiving/fund_results.aspx?                                                    http://miracleformadison.blogspot.com/

New Fundraisers in Honor of Madison's 14th(!) Birthday

We have three (3) new fundraisers going on for Gene Therapy research. Check them all out and buy something in honor of Madison and all her friends!

• Roses for Research by Beb-e-ssentials: The roses
  were designed by and hand made by Penny Davidson of Beb-e-ssentials. Each rose is hand crafted and attached to a hair clip. You can choose the color of your rose clippie! Each rose is $6.00 or $8.00 with a headband and 40% of each goes to Miracle for Madison & Friends! Check it out today! Shop NOW by Clicking HERE (scroll down to the Crochet Rose) but be sure to let Penny know you are shopping in honor of Madison and her 14^th Birthday!
• Thirty One Party for Miracle for Madison & Friends: Jeni, mom to Annah, recently became a consultant for Thirty One. 100% of commissions for the month of February (now extended until March 2^nd!) will be donated to Miracle for Madison & Friends in honor of Madison's 14^th birthday. Madison, like Annah, has Spinal Muscular Atrophy and her family was told that she would not live past 2yrs of age. Her family has worked diligently to raise money to fund research so that Madison, Annah and all of the other kids like them can beat SMA for good! Shop NOW by Clicking HERE but be sure to let Jeni know you are shopping for Miracle for Madison.
• Tupperware Online Open-House for Miracle for Madison: Brandy, mom to Emma, is also helping us celebrate the miracle of Madison’s 14^th birthday. She is donating 100% of commission to Gene Therapy research for a cure for Emma, Madison, and all their friends living with SMA and those who have lost their battle. Hurry, though, this great fundraiser only lasts until February 25^th!!! Shop TODAY by Clicking HERE and be sure to let Brandy know you are shopping for a Miracle for Madison & her friends!

Don’t delay, shop today!! In honor of Madison’s 14^th birthday!

  http://miracleformadison.blogspot.com/