Not only was yesterday Mother’s Day, it’s also the time of year when most colleges are holding their graduation ceremonies. A story on the front page of the Chicago Tribune story yesterday celebrated both. Lucy Trevino, who has Spinal Muscular Atrophy Type 3 and is confined to a wheelchair, graduated this past weekend with an engineering degree. Her mother, Rosa, helped make it possible, by being right there with her in class, to assist with all of the things that SMA wouldn’t allow Lucy to do…

For the six years it took to get through one of the most rigorous programs in the College of Engineering, it was Rosa—a tad shy and always thinking two steps ahead—who got her daughter to every class, lab and study session. She knew which text and notebook to lay on Lucy’s desk. And she turned the pages when a heavy book tired Lucy’s hands.

For two or three hours, as Lucy absorbed lectures in calculus or thermodynamics or circuit analysis, Rosa sat not far away, just in case Lucy needed a sip of water or began choking.

To read the entire wonderful story, please visit the Chicago Tribune website. A video of Lucy and Rosa is also available on that page.

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Fight SMA’s chapter in New Mexico, Fight SMA Southwest / Desiree’s Buddies, has been quite busy over the past year. Last spring, the chapter’s president negotiated a deal for SMA billboards in Albuquerque, in the fall Desiree’s Buddies organized its first charity golf tournament, and they’re now organizing the second Spinal Muscular Atrophy Golf Classic. Now, the chapter has released its own YouTube video. Take a look!

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The below video has been posted on this blog before, but we noticed the other day that it’s had quite a number of views and comments on YouTube. That’s why we thought we would post it on the Spinal Muscular Atrophy Blog again, for those who haven’t yet seen it. It’s a fabulous video, created by Jim Vaile. It was shown in April, at the 2007 Fight SMA Spinal Muscular Atrophy Conference in Washington, DC. It features images of the children of Fight SMA, the reason for our fight. Watch the video and, if you can, post a comment by clicking on the video and visiting the YouTube site. The more “views” counted by YouTube, the higher the chances that the video will maintain a prominent position.

Enjoy!

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It turns out YouTube can be of more use than looking for silly videos.  Brad Fisher’s daughter, Shira, has Spinal Muscular Atrophy Type 1.  Shira is now two years old, and over the past few months Brad has posted several home grown how-to videos related to the things parents need to do to take care of their SMA kids.  The videos run through the steps needed to perform a cough assist and change a “mickey button”.  While Mr. Fisher isn’t a doctor, and you should always consult your doctor with questions about procedures, it’s extremely helpful to SMA parents to see how others perform these tasks.

Click here to view all of Shira’s videos on YouTube.

To learn more about Shira, visit her website.

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Assistive technology has advanced by leaps and bounds, allowing those with seriously debilitating illnesses to do more.  A company in the Netherlands called AssistiveWare recently released a video showing how Mchael Phillips, a teen with SMA, can play video games, instant message, and even write a book … all using only his thumb.  It’s amazing technology.

Learn more about Michael on the AssistiveWare website, and be sure to check out the video.

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

A big thanks to Jim for a great video.

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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 on video below that was uploaded to YouTube, was about his son, Callum, and the fight against spinal muscular atrophy. Fight SMA provided literature for the event to educate those in attendance about SMA.

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At the recent 2007 Fight SMA National Spinal Muscular Atrophy Conference, Congressman Patrick Kennedy of Rhode Island addressed the attendees about spinal muscular atrophy research funding and the SMA Treatment Acceleration Act. The proposed legislation, developed through a collaborative effort between Fight SMA, the SMA Foundation, and Families of SMA, would establish a national clinical trials network to develop treatments that are safe and effective for SMA patients.

Conference attendee Karin Vallo captured the speech on video. Karin is a leader in the Desiree’s Buddies / FightSMA Southwest Chapter in Albuquerque, New Mexico, and is the grandmother of Desiree. A big “thank you” goes out to Karin for helping us make this video available!

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