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Archive for May 2007

Special Mom Fights Against Multiple Diseases (Podcast Episode 5)

Posted: May 29th, 2007 | By: Staff | No Comments
Tuesday, May 29th, 2007

fightingback-ep5-070525.mp3
Fighting Back Podcast by Fight SMA and FighterMomAndrea Smith keeps busy, and she does it helping seemingly as many people as possible. She’s the latest interview subject in the Fighting Back podcast, and we’re proud to tell the story of this amazing woman.

For almost her entire life, Andrea has had epilepsy. Her young son, meanwhile, has accommodative esotropia with strabismus, an eye disorder that can lead to partial blindness if not treated. Most people in her situation would have little time for helping others. Not Andrea. She not only helps others dealing with issues similar to those of her family, but also spends her time volunteering to help raise awareness and funds for research into spinal muscular atrophy (SMA), a disease to which she has no direct connection. She’s also turned herself into a self-educated insurance expert who is willing to help anyone at any time who has been denied an insurance claim.

In Episode 5 of Fighting Back we talk to Andrea about the various causes she supports, how she got involved, and how she finds the time.

To contact Andrea to request help with an insurance claim, you can post a message on the FighterMom Community.

Fighting Back tells inspirational stories of people and families fighting serious or incurable diseases, and we love to hear from our listeners! If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page or leave us a voice mail message at 206-984-3669. You can also leave a message in the form of a comment on this blog as well. Finally, we’re also excited to now be featured on iTunes, and you can leave feedback there!

To hear Episode 5 of the Fighting Back Podcast, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

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Categories : Podcasts, Spinal Muscular Atrophy Families and Friends

Student Scientist Tackles Spinal Muscular Atrophy Testing

Posted: May 28th, 2007 | By: Staff | No Comments
Monday, May 28th, 2007

Elizabeth Heimbaugh of Akron, OH is doing research that would be impressive for scientists with years of experience. Thing is, she’s just graduating high school.

The 17-year-old recently won one of the Akron Beacon Journal Newspaper’s 2007 Gold Star Students awards. Earlier this year, she was named a semifinalist in the Intel Science Talent Search, known as the junior Nobel Prize. Her research was based on finding a less expensive way to test for spinal muscular atrophy. Elizabeth did her research at Northwestern University with the help of her aunt, Christine DiDonato, who works at the university and has a doctorate in molecular genetics.

An excerpt from the Beacon Journal article:

In simple terms, they sought to develop a method for detecting spinal muscular atrophy, a disease in infants that affects the muscles used for crawling, walking, head and neck control, and swallowing. They amplified samples of DNA from infected patients. Then, using a machine called a light scanner, they heated the samples up. Lastly, they used a computer program to examine the curves created by this process.

Elizabeth and DiDonato determined this method could detect the disease in infants and would be cheaper and easier than the process currently being used. DiDonato is continuing this research at Northwestern.

“It’s a promising technique,” Elizabeth said.

With Elizabeth’s Intel Talent Search award, she received a $1,000 scholarship and [her high school] got $1,000 for science materials.

Elizabeth will attend Stanford University, where she might major in human biology.

You can read the entire article on this remarkable young lady at the Beacon Journal site.

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Categories : Spinal Muscular Atrophy Science and Research

Spinal Muscular Atrophy Kids Video (The Kids of Fight SMA)

Posted: May 24th, 2007 | By: Staff | No Comments
Thursday, May 24th, 2007

The video slide show below was created by Jim Vaile and was shown in April, at the 2007 FightSMA Spinal Muscular Atrophy Conference in Washington, DC. It features images of the children of FightSMA. They are the reason for our fight.

A big thanks to Jim for a great video.

Comments (0)
Categories : Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy Videos

J. Robbins Speaks on Spinal Muscular Atrophy at Benefit Concert

Posted: May 21st, 2007 | By: Staff | No Comments
Monday, May 21st, 2007

Musician and SMA Dad J. Robbins gave a heartfelt speech last month at a reunion benefit concert of his former band, Dismemberment Plan. The speech, which is in video below, was about his son, Callum, and the fight against spinal muscular atrophy. FightSMA provided literature for the event to educate those in attendance about SMA.

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Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy Videos

Spinal Muscular Atrophy Medical and Scientific Community Call to Action

Posted: May 18th, 2007 | By: Staff | No Comments
Friday, May 18th, 2007

On May 18, 2007, a letter signed by clinicians and investigators from the medical and scientific community was presented to the U.S. Department of Health and Human Services (HRSA) Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) restating the case for spinal muscular atrophy to be included in the newborn screening efforts. Additional signatories are still being recruited and we welcome any scientists who would like to add his or her name to contact Laura Breiteneicher.

You can read a copy of the letter in PDF format on the Fight SMA website.

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Categories : Spinal Muscular Atrophy Science and Research
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