Featured Angel for July 2010

INTRODUCTION:
This is Emma Clare Purk. She was born January 3, 1989. She was diagnosed with Spinal Muscular Atrophy (SMA) type I, almost right after she was born because her older sister, MJ, had been diagnosed in June of 1988. Emma was always in and out of the hospital many times during her life. On March 25, 1992, Emma passed away with all her favorite stuffed animals around her.

There is HOPE:
Although Emma's life was shortened, drastically, because of SMA and complications associated with it, Emma's entire family continues to support research for a cure for SMA, in memory of Emma. Particularly noteworthy in the field of research, within the last few years, is the ground breaking research being done at Nationwide Children's Hospital and The Ohio State University. Recent reports have SMA as the quote "closest genetic disorder to a cure" and the research efforts, although in their very early stages, are proving effective!!

OBJECTIVE:
Emma outlived many doctor's expectations by living to see her 3rd birthday in January of 1992, By doing so Emma surpassed many other SMA children who, sadly, earned their angel wings much earlier in life ; However, it is our wish that no parent ever has to bury a child because of SMA...Especially when the cure is so close, thanks the efforts of Miracle for Madison & Friends and other organizations. By donating and helping us find a cure for SMA, you can help families, like ours, whose lives are forever altered because of the diagnosis of Spinal Muscular Atrophy. No parent should ever have to lose a child and, to quote Kenny Chesney "sometimes I wonder who you'd be today"...

A little more about Emma:
Emma was an atypical 3 year old. She was wise beyond her years and knew that her time on earth was short. She had a very giving spirit and lived life to it's fullest extent. Emma loved her family, stuffed animals, especially BearBear, school, movies, especially an exercise video featuring a very attractive 20 something-year-old guy, M&Ms, friends, reading and picking her own clothes. Her physical disabilities limited her from being able to do everything she wanted but she always managed to find ways to express her desire for constant movement. Her frequent hospitalizations would have made an ordinary person feel that life was not worth living but not our Emma. She was a very happy little girl who lived life to the fullest every day that she had!

PLEASE DONATE!
To donate, please locate the "Donate Here" tab, on the far right at the top of the page, to have funds directed towards this groundbreaking research in SMA.
Please mark on your donation via computer or check memo...

IN HONOR of EMMA P.

so we can track the donations!

In Closing...
We wish to thank you for reading about Emma, SMA, and supporting research for cure. SMA changed our lives in ways we never could have imagined. Please help us find a cure!
For additional information on the OSU ground breaking research on SMA, please visit the Miracle for Madison website, by clicking HERE!

Love
The Purk Family

Featured Organization for July 2010

INTRODUCTION:
My beautiful wife Catherine and I had tried unsuccessfully a few times to have a child. But finally on Feb. 27 of 2009 all our prayers and dreams had come true. My wife gave birth to the light of our lives, our precious angel Sophia.

She was just a perfect baby.

She had all her fingers and toes and she was just beautiful. At about 2 weeks we started to notice something was wrong. Sophia wasn't moving as much as we thought she should and it was dismissed by our pediatrician as she was just a lazy baby. By the time 5 weeks came around the Dr suggested we have her tested for a neurological disease called Spinal Muscular Atrophy. After a grueling 2 weeks of waiting the results came back and my daughter tested positive.

There are no words to describe the feeling of helplessness we felt. The child that you have waited your whole life for would be taken from you in six months and she could last 2 years if you are extremely lucky.

There is HOPE:
Sophia's Cure is in the Pepsi Refresh Contest currently in 3rd place! They are now committing the entire $250k to the promising gene replacement therapy at OSU/NCH if they WIN! They need more daily votes to reach the #1 or #2 place to win the money! PLEASE VOTE DAILY & pass it along to all your email friends and coworkers!

Help us get a Miracle For Madison and ALL her SMA friends!

http://www.refresheverything.com/sophiascure

OBJECTIVE:
Sophia's Cure Foundation is a non for profit organization which was formed shortly after our daughter was diagnosed with Spinal Muscular Atrophy. The foundation was created to assist in funding for clinical research towards finding a cure for SMA and to offer support to families affected by this disease by providing advocacy, awareness, education and support.

We believe every child affected by SMA should be given a chance to live a long and normal life.

PLEASE DONATE!
To donate, please visit Sophia's Cure website and donate to Sophia's Cure to continue supporting their efforts and to have funds directed towards this groundbreaking research in SMA.

Click HERE to Donate to Sophia's Cure today

Please mark on your donation via computer or check memo...

Directed from Miracle for Madison & Friends

so we can track the donations!


In Closing...
We would like to thank everyone, in advance, for their support, donations and for spreading the awareness of SMA!!
For additional information on the OSU ground breaking research on SMA, please visit the Miracle for Madison website, by clicking HERE!

Love
The Sophia's Cure Team
Vincent, Catherine, Sophia & Supporters

Featured Friend for July 2010

INTRODUCTION:
Karah was born in March 2007 and by August 2007 she was diagnosed w/ SMA Type1. SMA has no cure nor treatment and sadly as many as 90% of SMA type1 children die by age 2.

There is HOPE:
Ohio State has ground breaking research that is proving "effective"!
And recent reports have SMA as the quote "closest genetic disorder to a cure"
Type 1 clinical trials could start w/in the next 18months.....

Walk for a CURE:
In August we will walk among friends and family to support kids like Karah and help fund research to find a CURE! We ask for your help in donations to help us reach that goal!

OBJECTIVE:
Karah celebrated her 3rd birthday in March 2010, surpassing many other SMA children who have sadly earned their angel wings; By donating and helping us find a cure for SMA, you can help her and the thousands of other children afflicted w/ this terrible disease, grow up and have a better quality of life!

A little more about Karah:
Karah is a typical 3 year old; she loves her sister and brother, barney, littlest pet shop, and dress up....Her physical disabilities are quite limiting yet SMA does not affect her brain! Her daily care is much more demanding than a non-SMA child and she does require skilled care around the clock--- However even w/ all that she is a very happy, loving girl who loves life! and we would not change anything, except find a cure!

PLEASE DONATE!
To donate, please locate the "Donate Here" tab, on the far right at the top of the page, to have funds directed towards this groundbreaking research in SMA.
Please mark on your donation via computer or check memo...

IN HONOR of KARAH B.

so we can track the donations!

In Closing...
We sincerely THANK YOU for your donation and for spreading the awareness of SMA....
For additional information on the OSU ground breaking research on SMA, please visit the Miracle for Madison website, by clicking HERE!

Donate HERE!

Love
The Barry Family