Featured Friend for November 2010

Introducing:



Leah Jean Miller was born September 29, 2004. She has Spinal Muscular Atrophy (SMA) type 1. Leah was born a “normal” child. She laughed, cried, played and enjoyed every minute, but at 5 months old she was not progressing like normal children. She started Physical therapy because Drs. thought she was a lazy baby, but as a precaution she was sent to see a Neurologist. She was tested for many things. In July of 2005 she was diagnosed with SMA- Prognosis 2 years. We were devastated, but we vowed to give Leah the most normal life possible. Leah got sick in November, and spent 3 months in the Hospital- getting treatments, G-tube surgery and learning her new way of life. She went home till April. On April 22nd 2006 Leah coded at home. She stopped breathing for 10 minutes. She was in a coma, given no hope, Drs. said a choice had to be made, and 5 minutes later she woke up. Leah lost many things from this “episode” some of which she has never regained, but she has regained her passion for life, and the ability to touch the hearts of everyone she meets.

There is Hope.

We continue to be amazed by the medical advancements in Gene Therapy that are being made at Ohio State University. We Pray that one day soon there will be a cure.

Objective

We live one day at a time making each day the best it can possibly be. On September 29, 2010 Leah Celebrated her 6th Birthday. Many SMA kids never make it this far. It is our hope that we can spread the word, and raise enough money to one day END this disease. By donating YOU can make a difference.



A little more about Leah:

Leah is as fancy as they come. She is very much of a girly- girl. She loves books, music, cooking shopping, and CHAPSTICK. Leah’s body limits her to what she can do on her own, but she has plenty of people that are willing to help her reach all her goals. SMA is a life threatening disease, but it does not take the fun out of her life. She continues to thrive mentally. Our family may be a little different. Leah has to have cough assist treatments twice a day, wears a bi-pap mask to bed, rides in a wheelchair, but there is nothing different about the hope we have for her to live a long and happy life. All we need is 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 Leah Jean

so we can track the donations!



In Closing...

Thank you for you time and support for Leah and all of these AMAZING kids! With Faith anything is possible & with your help and support one day we will find a cure! For additional information on the OSU ground breaking research on SMA, please visit the Miracle for Madison website, by clicking HERE.

Lots of Luv,
Scott, Nikki & Leah Jean Miller

Featured Angel for November 2010

Lainie Grace Border joined us on September 23, 2002. What a perfect, beautiful baby! Our hearts swelled with LOVE. We had no idea we could love so much! My pregnancy was great, and labor and delivery went smoothly, too. We had a HEALTHY baby and life was the best it had ever been. We brought our daughter home and settled into our new life as a family of three, dreaming about Lainie's future and all the wonderful things we would experience with her. How quickly those dreams came crashing down. At 7 weeks old, Lainie was diagnosed with Spinal Muscular Atrophy (SMA) Type I. With broken hearts, we told our daughter good-bye on February 13, 2003.

Lainie is forever a part of who we are and who we will become. Through all our days on earth, we will miss her smile and the joy she brought us during her short 4 1/2 months. We will also give thanks to God for letting us care for such a special baby girl. To honor her, we continue to stand up with others affected by this terrible disease to raise awareness of SMA, and ultimately raise money to find a CURE!!! Since Lainie's birth, many strides have been made in finding a cure for SMA. We aren't there yet, but we are truly getting there!!! Please help us honor Lainie's memory by donating toward the cure that will mean so much to so many families- those who have lost precious children, those who pray for a cure for their children who currently suffer the effects of SMA, and those who do not yet know how much this cure will mean to them.



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 Lainie Grace

so we can track the donations!

Thank you so much for reading about Lainie and considering donating to end this life-stealing disease.

Love,

Julie, Bret, and Luke (little brother)

Featured Organization for September 2010

INTRODUCTION:

Meet Cade Trobert 11 years old and his cousin Katelyn Stare 15 years old from Newark Ohio. Both are battling and beating Spinal muscular Atrophy (SMA) Type 2. They are very active in their community and school. Cade loves sports and Katelyn is enjoying the high school scene. Ten years ago they joined in the Fight to Cure SMA by fundraising for the SMA Lab at The Ohio State University. Every year, in the fall, they host the following fundraiser: The Cade & Katelyn "Cure SMA" Charity Golf Classic.

There is HOPE:
The families of Cade & Katlyn know a "Cure fore SMA" is within our reach, thanks to the many breakthrough discoveries by the OSU researchers. The most recent breakthrough in the efforts to "Cure SMA" is the current and promising Gene Replacement Therapy Program.

OBJECTIVE:
The Cade & Katelyn "Cure SMA" Charity Golf Classic will be September 25, 2010 at the Links at Echo Spring ( 5940 Loudon Street Rd, Johnstown Ohio 43031). Team fee is $300 and Hole Sponsorship fee is $100. The outing include; green fees, shared cart, breakfast, lunch, prizes and special event holes. The family and friends of Cade & Katelyn have made a commitment to continue to hold this annual event until the ultimate goal of a "Cure Fore SMA" is achieved. Thanks to the efforts of many volunteers, corporations and friends, the past nine golf events raised over $220,000 for scientific research towards a Cure Fore SMA.

PLEASE DONATE!

Please consider joining s in our efforts for a "Cure" to end this devastating disease. If golfing is not your cup of "tee", consider being a team sponsor, hole sponsor, donate a door prize or JUST plain make a cash donation to the fund. 100% of all proceeds will go to the Cade and Katelyn Fund at OSU/SMA research Tax ID # is 31-1145986 (Fund is house at The OSU Foundation) Contact Todd & Michelle Torbert at 740-763-0169 or Duane & Kelly Stare at 740-323-4095 for more information on the golf classic and the fund.

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

Directed from Miracle for Madison & Friends

so we can track the donations!

Featured Friend for September 2010

INTRODUCTION:
Hi, this is Roman Anderson. He was born on May 11th 2007, and was 8lbs 4ozs and 21.25 inches long. When he was just 4 weeks old I noticed he was more floppy than most babies so I spoke with his pediatrician. The doctor sent a referral to Cincinnati Children’s neurologist and we made an appointment for July 12th. But we were not able to wait that long. On July 8^th 2007, Roman was rushed to the hospital because he wasn’t breathing. The hospital ran so many tests, including one for Spinal Muscular Atrophy, SMA. By a few days after that admission, everyone was fairly certain that Roman had SMA type I.

There is HOPE:
Ohio State University and Nationwide Children’s Hospital, in Columbus, Ohio, have been spearheading ground breaking Gene Therapy research that has proved "effective" in animal models! In addition, recent reports have stated that SMA is the "closest genetic disorder to a cure"…This is truly inspiring for families and individuals who have been battling this condition for years.

OBJECTIVE:
Roman celebrated his 3rd birthday in May of 2010. We cherish every day we have with him and are so thankful that we have had 3 years after being told that we may only have months! So we will continue to make everyone of his days great for him! By donating to Miracle for Madison & Friends, in honor of Roman, you’re helping us find a cure him and the thousands of other people!

A little more about Roman:
Roman is a typical 3 year old boy. He idolizes his big brother, Austin, and his Daddy, Matt. Toy Story, SpongeBob, flying with his family for the first time to California, and arts & crafts are also favorites. Roman absolutely loves school and learning. When he isn’t busy creating artwork, watching Daddy and Austin play basketball, he loves driving his power wheelchair and playing baseball on his team, the Pirates. Roman could not adore anyone more than his Mommy, who is constantly challenging herself and Roman to try new things. He’s also learning to communicate his desires and needs with his communications device, called an Echo. Although Roman may appear to be extremely physically limited by SMA, he leads a very full life. He can’t do a lot independently but, at age 3, Roman has experienced & enjoyed a lot more of life than many people do in a lifetime.

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

IN HONOR of ROMAN A.

so we can track the donations!

In Closing...
We sincerely THANK YOU for considering making a donation in honor of Roman. We hope that in addition to a donation, you will consider spreading the awareness of SMA. With your help, we can be a part of a great miracle – a cure for Spinal Muscular Atrophy – a cure for Roman and his friends!
For additional information on the OSU ground breaking research on SMA, please visit the Miracle for Madison website, by clicking HERE!

Love
The Anderson Family
Susie, Matt, Austin, & Roman

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