A reminder that a satellite symposium on SMA entitled “NMJ in spinal muscular atrophy - the chicken or the egg?” is being sponsored by Families of SMA, FightSMA, MDA, and SMA Foundation. The event, to be held Monday, November 5, 2007 at 6:30pm in the Annie Room of the Manchester Grand Hyatt San Diego, will be moderated by Dr. Michael Sendtner of the Universität Würzburg Institut für Klinische Neurobiologie in Germany. After refreshments from 6:30-7:10 PM, the meeting agenda is as follows:

For more information, meeting attendees can stop by the SMA organizations’ booth, #4301.

A list of more upcoming professional meetings can be found at the FightSMA website.

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The Savannah Morning News ran a great story yesterday about Skylar Swanson and her family of Richmond Hill, Georgia. After she and her twin sister Cassie were diagnosed with Spinal Muscular Atrophy ten years ago, Skylar’s family started SMA Angels Charity. Representatives of SMA Angels Charity, including the organization’s president and the twin’s grandmother Anne Meguiar and Board of Directors member Bubba Summerlin, have repeatedly joined FightSMA for its Annual Conference in Washington, D. C. and have met with Georgia’s Congressional representatives on issues including the SMA Treatment Acceleration Act.

From the article:

Butterflies follow 10-year-old Skylar Swanson.

They perch on her wheelchair, her suction machine and oxygen tube. Some even land on her strawberry blonde hair, on the tip of her finger or near her yorkie who rides on her lap.

The Richmond Hill fifth-grader, whose muscles are so weak she can’t walk or hold her head up, has a simple explanation for the butterflies.

Skylar says her twin sister, Cassie, sends them to her from heaven. Skylar’s identical twin has become her guardian angel.

When Cassie died last June, Skylar didn’t know a day without her twin.

The two girls were born with spinal muscular atrophy, an inherited neuromuscular disease that’s the No. 1 genetic killer of children younger than 2.

Up to one in 6,000 children are born with the disorder. Many are unable to stand, walk or even breathe without assistance.

The twins’ parents, David and Dana Swanson, had a choice: provide respiratory aid and ongoing, noninvasive care to keep the twins alive.

Or do nothing, beyond keeping the girls comfortable without breathing assistance, knowing the twins would die sooner.

They chose to fight for life.

To read the entire article, visit click here. Also, mark your calendars for SMA Angels Charity’s 10th So Many Angels Ball being held November 17th at the Savannah International Trade & Convention Center.

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On October 19th, the St. Petersburg Times ran an article about Trevor Smith and Laurie Elliot of the Tampa Bay chapter of FightSMA. Both Trevor and Laurie have urged Florida’s congressional representatives to support the SMA Treatment Acceleration Act.

From the article “Parents issue urgent plea to politicos”:

Thank God for the box of tissues. Trevor Smith couldn’t control her tears.

It could have been nerves. She was in Washington, D.C., without her husband or daughter for the first time.

Or maybe it was the gravity of what she had to tell C.W. Bill Young, the Bill Young, senior legislator known for getting the job done on Capitol Hill, face to face.

There was Trevor - 39-year-old wife of T.A. Smith, part-time sales rep for Kelly Services staffing agency and the mother of 6-year-old Joie - in a big, “stately looking” office.

She told Young about her daughter and about the disease that Trevor had never heard of until doctors diagnosed Joie. Spinal muscular atrophy, SMA for short, is the leading genetic killer of babies, according to the international nonprofit organization called Fight SMA.

On the Hill that day in April, dozens of regular people active in Fight SMA met with legislators or their aides. Laurie Elliott, whose 11-year-old daughter has the disease, had traveled from Hyde Park to sit across from Tampa’s own Rep. Kathy Castor.

They wanted to tell the people with political strength about an incurable disease that can lead to muscle weakness in children. They wanted to tell them that researchers think they can make a difference if they get more money for clinical trials and such.

To read the entire article, click here.

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Spinal Muscular Atrophy will be in the spotlight in an upcoming episode of the FOX program House. The show that will air on Tuesday, October 9 will feature an adult character with Type 3 SMA.

One of the writers for House has a seven-year-old son with Type 2 SMA, and is very active in the Southern California chapter of Families of SMA. Families of SMA, Fight SMA, and the SMA Foundation, are working together for passage of the SMA Treatment Acceleration Act. The bill has been introduced in the U.S. Senate and House of Representatives. If signed into law, it would create a national clinical trials network for SMA.

This is a wonderful opportunity for viewers to learn more about a disease many know little or nothing about. Check your local listings, and be sure to tune in!

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FightSMA will be hosting booth #37 at the 36th Annual Child Neurology Society Meeting being held this week in Quebec City, Quebec. Doctors and researchers will receive general information about Spinal Muscular Atrophy, current and future clinical trials, and the SMA Treatment Acceleration Act. Also, visitors to the booth will have opportunities to discuss with FightSMA Scientific Advisor Dr. Alex MacKenzie.

During the Society for Neuroscience’s 37th Annual Meeting in November, a satellite symposium on SMA entitled “NMJ in spinal muscular atrophy - the chicken or the egg?” will be held Monday, November 5, 2007 at 6:30pm in the Annie Room of the Manchester Grand Hyatt San Diego. This event is being sponsored by Families of SMA, FightSMA, MDA, and SMA Foundation. For more information, meeting attendees can stop by the SMA organizations’ booth, #4301.

A list of more upcoming professional meetings can be found at the FightSMA website.

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Fight SMA’s yearly fundraiser, SMAsquerade, is coming up on October 13, and time is running out to submit your absentee bid for some of the INCREDIBLE items we have available this year.  Absentee bids must be submitted via email or fax by 5:00 p.m. on October 12.  All proceeds from the auction will go toward finding a cure for spinal muscular atrophy, the leading inherited killer of children under two.

Here’s a look at some of the items up for bids at SMAsquerade: Make Tracks!

• Corporate box seats to the 2008 Kentucky Derby and Kentucky Oaks!
• An eight-day whale tracking adventure in the Gulf of California, accompanied by a National Geographic Senior Editor and Photographer!
• An amazing package trip to Nashville during Christmas 2007, including a three night stay for four at the Nashville Opryland Resort!
• A 10-day stay in a privately-owned hacienda in Clearwater, Florida!
• MUCH, MUCH more!

More details, plus a video of the beach house in Florida, are available at the SMAsquerade 2007 page on the Fight SMA website.  Absentee bidding details are available here.

SMAsquerade 2007 is presented by SunTrust! 

Please join in the fun!

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Fight SMA’s Canadian chapter is preparing to hold a conference of spinal muscular atrophy parents and researchers from Canada.  Fight SMA Canada, otherwise known as Tori’s Buddies, is hosting the event at Bloorview Kids Rehab in Toronto.  Featured speakers will include:

• Dr. John Bach
• Brian Weaver
• Dr. Alex MacKenzie
• Dr. Ben Alman
• Pat McKeever

Topics on the agenda include respiratory care, updates on SMA research, orthopedic issues, and strategies for coping.

More information is available on the Tori’s Buddies chapter page.  You can also view and print a PDF version of the agenda and registration form.

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