SMA Gene Therapy

According to Dr. Kaspar, Principal Investigator, The Research Institute at Nationwide Children's Hospital: "Based on positive pre-clinical studies using a gene therapy to treat a mouse mouse model of SMA, The Kaspar and Burghes Laboratories at Nationwide Children's Hospital and The Ohio State University initiated preliminary studies in non-human primates and have seen successful translation of the gene delivery approach in a larger species."

"These results have prompted a research and clinical team including Dr. Kissel, Dr. Kolb, and Dr. Mendell to be established to initiate a translational program for human clinical trials for SMA. Presentation of the data and the plans to rapidly move the program forward are forthcoming in the next several weeks." For further information and to stay abreast of SMA research, visit our research page often.

Hocking Hills Fundraiser & Promotion

4 Seasons Hideaways in Hocking Hills, Ohio will donate 15 percent of every reservation to SMA Research if you mention Miracle For Madison when you book your stay with them. Grand Opening 10 percent discount for the month of February for any reservation in 2010. Brand new homes including an ADA accessible lodge. Check out their website at www.4seasonshideaways.com. Check out more everyday ways to help fight SMA on our events page.

4 Seasons Hideaways LLC is the home of the most environmentally friendly, short term rental lodges in the beautiful Hocking Hills of Ohio. Their cabins/lodges are the perfect destination for family reunions, family, friend, honeymoons, multiple couple, church and corporate retreat get aways.

To receive special promotional and seasonal discount offers from time to time, please become a facebook fan of 4 Seasons Hideaways! You can also register on at www.4seasonshideaways.com for a chance to win a one night free stay each year.

For more details and to ensure your discount, check out this flyer.

New SMA Presentation

On Madison's 13th birthday we were blessed with another miracle. Dr. Mary Schroth who is an SMA expert from Madison, WI spoke at Nationwide Children's Hospital on the pulmonary management of SMA. Her entire presentation can be viewed here: Respiratory Care Options For Children With Neuromuscular Weakness Thank you Dr. Schroth for taking the time out of your busy schedule to do this. Thank you Dr. John Kissel, Dr. Richard Shell & FSMA for your support.

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 here.

Read more stories about Madison at Angel News.

Gene Therapy and SMA

Read the related TIME Magazine article Is Gene-Therapy Medical Treatment Ready for Prime Time?

Care Options for Neuromuscular Weakness

Read about Respiratory Care Options For Children With Neuromuscular Weakness

Meet Our Newest SMA Fan

Watch the video from our newest SMA friend and buckeye fan. This is one of the reasons we must continue to fight for a cure.

The Annual Madison's Angels at the End Zone Party

Our annual Madison's Angels at the End Zone fundraiser has been hit by several sacks, fumbles and interceptions over this past year. We must sadly inform you that we will NOT be able to host this event this year as we had previously hoped to. Our last hit and final interception came when the Buckeye Hall of Fame Cafe CLOSED it's doors on Dec. 31st, 2009. We are now without a venue for Madison's Angels at the End Zone. We have not been able to secure another comparable location which would accommodate this magnitude of an event without running into a huge financial hit.

We are still in need of a MIRACLE and ask that in HONOR of Madison's 13th birthday on 2-4-10 that you consider making a donation for $13 to recognize each year of Madison's continued fight with this horrible disease SMA! You can make an online donation by clicking on the link to the right on the sidebar entitled I-Give to OSU or please mail your check made payable to our name and address on the sidebar.

THANK YOU ALL for your support! We can't do this without YOU! Please contact us if you would like to VOLUNTEER & join us in this fight! 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.

Our Heartfelt Sympathy to the Nicholson Family

One of our very special volunteers, Dorsey Nicholson, passed away recently. Dorsey is the artist who created several pieces of artwork for us that brought in several thousands of dollars for SMA Research. His most famous painting is of the Quarterbacks which highlights Rex Kern and Craig Krenzel. We are blessed to have been a recipient of his great gift! THANK YOU, Dorsey, for being one of Madison's Angels! Our hearts and prayers go out to his family. Please keep them in your prayers.

Thank You, Chris and Handel's Ice Cream!

Another one of Madison's Angels, Chris DeAngelo recently closed Handel's Ice Cream. Chris brought SMA awareness to his 3 local stores and collected tip money for MFM&F. Our heartfelt thanks goes out to Chris and his employee's for their many years of support!

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.

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. 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.

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.