Welcome
Miracle for Madison & Friends is dedicated to raising money to help OSU researchers find a cure for Spinal Muscular Atrophy (SMA). This website is packed with information on SMA, including ways to help find a cure, updates on research, merchandise to show your support as well as pictures and stories about Madison and her many friends.
Announcements
The Annual Madison's Angels at the End Zone Party
Our annual Madison's Angels at the End Zone fundraiser will NOT be held this coming March 2009. Please continue to support Madison and her friends with donations and prayers as you have done in the past. We will be back with the event in March of 2010. Please contact us if you would like to volunteer any of your time to help us with the planning. This is not only for Madison but for all her friends with SMA. There is no way we could get through this without YOU! |
There are many other opportunities to show your support for Madison and others with SMA. Check the events page for information on the many upcoming fundraisers and fun opportunities to get involved!
New SMA Care Series Booklets
Families of Spinal Muscular Atrophy announces a new booklet in its ongoing series on SMA care. This new booklet is focused on the critical aspects of respiratory care for children with Spinal Muscular Atrophy. The booklet was authored by Mary Schroth, M.D., a member of the Families of SMA Medical Advisory Council, and a leading expert on respiratory care for SMA patients. Read more at FSMA or download a free pdf copy here.
Also available from FSMA is a new booklet on Caring Choices for Parents of Infants Newly Diagnosed with SMA Type I. Read more at FSMA or download a free pdf copy here.
Research Update
Breakthrough in the study of central nervous systems: Investigators at The Research Institute at Nationwide Children's Hospital have identified a non-invasive method for delivering genes to the central nervous system, a strategy that penetrates the body's protective blood-brain barrier with unprecedented success. To read more about the research breakthrough visit our research articles page.
Clinical Trial Update
The Ohio State University Medical Center, Department of Neurology is currently enrolling infants with type 1 SMA for the evaluation of Valproic Acid and Carnitine as a potential treatment for SMA. This is a multi center trial fully funded by Families of SMA. For more information on this trial and for more information about the SMA Treatment Acceleration Act visit our research page.
Petition for SMA Treatment Acceleration Act
The Strong family from California began a petition to gather support for the SMA Treatment Acceleration Act in honor of their daughter Gwendolyn who has type 1 SMA. Here in Ohio, we have been able to secure support of this bill from Senator Sherrod Brown, Congressman Pat Tiberi and Congresswoman Debra Pryce. For this bill to go further we need more cosponsors in the House and Senate. You can help show how important this legislation is to you by signing the petition. To sign the petition click on the End SMA sign to the left. |
Madison Turns 12
Happy Birthday Madison! On February 4th Madison turned 12 years old. Keep in touch with Madison and subscribe to all the email updates via her caringbridge site.
In the News
Special Children Offer Lessons of a Lifetime by Candace Preston-Coy
Over the course of my 25 years in journalism, I've met many extraordinary people of all ages, vocations and walks of life. I've also found myself in situations that had both positive and negative effects on my life and the way I live it... (Continue reading this story)
Read more stories about Madison at Angel News.