- SMA Awareness month - Proclamation -Proclamation by Mayor Tim Licklider proclaiming August as SMA Awareness month at Miracles & Madness candle lighting and balloon release on 8-11-10
- Miracles & Madness Balloon Release 8-11-10 - Watch as balloons released on the word "FLY"! Notice the light up balloons too!
Balloon Release last day of the Miracles & Madness SMA family gathering at the Miracle League Field in Dublin, Ohio on 8-11-10. Remembering So Many Angels lost and honoring those still fighting the disease spinal muscular atrophy or SMA. - Miracles & Madness Candle Lighting 8-11-10 -Candle lighting last day of the Miracles & Madness SMA family gathering at the Miracle League Field in Dublin, Ohio on 8-11-10. Remembering So Many Angels lost and honoring those still fighting the disease spinal muscular atrophy or SMA.
Monday, August 30, 2010
August is SMA Awareness Month
August is SMA Awareness Month and as such, we wanted to post videos that show part of the awareness raising that occurred in Columbus, Ohio. The videos are on YouTube and may take several minutes to load but are well worth the wait. Enjoy!
Sunday, August 29, 2010
New Promotional Videos Developed for SMA Organizations
We recently decided to have our summer intern, MJ Purk, create some videos that explain SMA and feature children and adults with SMA. She will be creating four (4) versions of the video set to various types of music. We hope that these videos educate communities, individuals, corporations, and medical professionals about SMA and how we are so close to the cure with the efforts of the researchers at The Ohio State University and Nationwide Children's Hospital.
To view the Pop/Contemporary Music Version of the Spinal Muscular Atrophy Promotional Video - Click HERE
To view the Country Music Version of the Spinal Muscular Atrophy Promotional Video - Click HERE
BELIEVE in MIRACLES
To view the Pop/Contemporary Music Version of the Spinal Muscular Atrophy Promotional Video - Click HERE
To view the Country Music Version of the Spinal Muscular Atrophy Promotional Video - Click HERE
Madison Featured in This Week
Can you believe it? Yep, at 13 Madison gets to make another appearance in the newspaper! The article discusses the success of the first ever Miracles & Madness Family Gathering that was put together by Miracle for Madison and was pretty successful for the first round. The article was very exciting for all of us!
Click HERE to read the article, "At 13, Dublin girl still gives hope to families facing SMA" or scroll down to read the article!
At 13, Dublin girl still gives hope to families facing SMA
ShareThisWednesday, August 18, 2010 12:20 PM
By JENNIFER NOBLIT
ThisWeek Staff Writer
Madison Reed is still fighting.
The Dublin 13-year-old born with type 1 spinal muscular atrophy has beat the odds. When she was 1, doctors told her parents to go home and enjoy what little time she had left.
According to the SMA Foundation's website, children with Madison's type of the genetic disease, characterized by progressive muscle weakening and loss, usually don't live beyond age 2.
Madison was among a group of SMA families that gathered in Dublin last week.
The gathering isn't an annual thing now, but Madison's aunt, Michellae Worrellia, said it was a good opportunity to meet other families facing the same illness.
"A long time ago, the SMA community used to do family gatherings and then stopped because we were going all over the country. It was hard to find a place for everybody to gather," she said. "We decided we wanted to do a gathering because one of the national organizations did a conference and it was in California, so we decided to get one centrally located."
Worrellia said the gathering attracted about 15 families throughout the week, and Madison's mother, Annette, said she and her daughter had the opportunity to meet people they've only spoken to online.
"We just got together and met each other," Annette said. "A lot of us have talked just over the Internet. It was nice to meet people you just talk to online."
Activities for the four-day gathering included a trip to the Mall at Tuttle Crossing, the Columbus Zoo & Aquarium and a candlelight vigil at Miracle League.
In addition to candles, the Aug. 11 event also included the presentation of a $250,000 check to local researchers, and Dublin Mayor Tim Lecklider proclaimed August as SMA month, Worrellia said.
Miracle for Madison & Friends, the Reed family's fundraising group, also has done fundraising and given money for research into cures for SMA.
"We started fundraising 12 years ago, and the Dublin community has been involved a lot," Annette Reed said. "Our fund is with the Ohio State University Foundation, and all money goes to research at OSU and at Nationwide Children's Hospital."
According to Annette, several advances have occurred recently in gene-replacement research.
"It's the most promising treatment that's out there right now, and it's to the point where we're almost there," she said, adding that FDA testing is expected to come soon. "There are some other therapies out there that look promising, but they're further away for trials. This is our best chance right now."
Though Madison has stopped attending Dublin City Schools because of health complications, Annette said, she is still fighting and celebrated her 13th birthday at home with family in February.
'We haven't been able to do a big event for a few years," she said. "I think a lot of people have forgotten what we're doing. I just want them to know Madison is still fighting."
For more information on Madison, SMA or Miracle for Madison fundraising efforts, visit miracleformadison.org.
Click HERE to read the article, "At 13, Dublin girl still gives hope to families facing SMA" or scroll down to read the article!
At 13, Dublin girl still gives hope to families facing SMA
ShareThisWednesday, August 18, 2010 12:20 PM
By JENNIFER NOBLIT
ThisWeek Staff Writer
Madison Reed is still fighting.
The Dublin 13-year-old born with type 1 spinal muscular atrophy has beat the odds. When she was 1, doctors told her parents to go home and enjoy what little time she had left.
According to the SMA Foundation's website, children with Madison's type of the genetic disease, characterized by progressive muscle weakening and loss, usually don't live beyond age 2.
Madison was among a group of SMA families that gathered in Dublin last week.
The gathering isn't an annual thing now, but Madison's aunt, Michellae Worrellia, said it was a good opportunity to meet other families facing the same illness.
"A long time ago, the SMA community used to do family gatherings and then stopped because we were going all over the country. It was hard to find a place for everybody to gather," she said. "We decided we wanted to do a gathering because one of the national organizations did a conference and it was in California, so we decided to get one centrally located."
Worrellia said the gathering attracted about 15 families throughout the week, and Madison's mother, Annette, said she and her daughter had the opportunity to meet people they've only spoken to online.
"We just got together and met each other," Annette said. "A lot of us have talked just over the Internet. It was nice to meet people you just talk to online."
Activities for the four-day gathering included a trip to the Mall at Tuttle Crossing, the Columbus Zoo & Aquarium and a candlelight vigil at Miracle League.
In addition to candles, the Aug. 11 event also included the presentation of a $250,000 check to local researchers, and Dublin Mayor Tim Lecklider proclaimed August as SMA month, Worrellia said.
Miracle for Madison & Friends, the Reed family's fundraising group, also has done fundraising and given money for research into cures for SMA.
"We started fundraising 12 years ago, and the Dublin community has been involved a lot," Annette Reed said. "Our fund is with the Ohio State University Foundation, and all money goes to research at OSU and at Nationwide Children's Hospital."
According to Annette, several advances have occurred recently in gene-replacement research.
"It's the most promising treatment that's out there right now, and it's to the point where we're almost there," she said, adding that FDA testing is expected to come soon. "There are some other therapies out there that look promising, but they're further away for trials. This is our best chance right now."
Though Madison has stopped attending Dublin City Schools because of health complications, Annette said, she is still fighting and celebrated her 13th birthday at home with family in February.
'We haven't been able to do a big event for a few years," she said. "I think a lot of people have forgotten what we're doing. I just want them to know Madison is still fighting."
For more information on Madison, SMA or Miracle for Madison fundraising efforts, visit miracleformadison.org.
Sunday, August 15, 2010
New Research at Nationwide Children's Hospital
More SMA research out of our Ohio and some of our favorite docs, Dr. Burghes and Dr. Kaspar! Check out the latest information released by Nationwide Children's Hospital about SMA and heart problems. Also check out this podcast by Dr. Kaspar about Muscular Dystrophy, Spinal Muscular Atrophy (SMA), and gene therapy research at Nationwide Children's Hospital.
- Click HERE to read about SMA & Heart Problems - Published 8/11/2010
- Click HERE to listen to Dr. Kaspar's Podcast on Gene Therapy - Released 5/2010
BELIEVE in MIRACLES!
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