You’re going to be hearing a lot about FighterMom Friday in the coming month or so. The event, which will be held on the Friday before Mother’s Day (May 9) at the New York Palace Hotel in Manhattan, will be a gathering of moms who are fighting against diseases or conditions affecting their children. The day will be full of speakers, conferences, and seminars, all focused on helping FighterMoms with their fight. The keynote speaker, we’re excited to announce, will be Katherine Crier. You know her from watching her on Court TV, CNN, Fox NewsChannel, and ABC. More will be announced in the coming weeks!

You can view the FighterMom Friday invitation here.

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Fight SMA released some big news this week. The recent SMAsquerade auction fundraiser in Richmond netted a total of more than $150,000 for spinal muscular atrophy research! Obviously, we’re very proud and would like to thank not only the donors, but also the sponsors of the event. The auction’s presenting sponsor was SunTrust, and the live auction sponsor was Dominion.

The items auctioned this year all fit the theme “Make Tracks.” Event organizers encouraged those in attendance at the event to make their mark by helping to cure SMA, and the attendees responded. The winning bids on several items reached near record levels. The highest bids came on these three items:

• Whale Tracking (Winning Bid: $12,000) - An eight-day whale-watching adventure in the Gulf of California, accompanied by National Geographic Senior Editor Don Belt and National Geographic Photographer Annie Belt.

• Two Days at the Track (Winning Bid: $10,000) - Corporate box seats plus accommodations for the 134th running of the Kentucky Derby, as well as Kentucky Oaks, which is run the day before.

• Tracking Flight (Winning Bid: $6,000) - A three-day hunt for four in St. Charles, Arkansas with Duck Hunt Guides, Inc., including lodging, hunts, meals and licenses.

To help Fight SMA reach its goal of finding a treatment or cure for spinal muscular atrophy, please visit http://www.fightsma.org and click on “donate.”

Read the entire news release about the announcement on PRWeb.

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The Richmond Chapter of FightSMA was recently highlighted for its 2007 gala SMAsquerade: Make Tracks. The Style Weekly article, Belles of the Ball, discusses the time, effort, and skills that go into special event planning and profiled “the women behind some of Richmond’s big galas for bigger causes,” including FightSMA president Martha Slay. FightSMA’s SMAsquerade raises funding for research into a treatment and cure for Spinal Muscular Atrophy.

There are careers and there are callings. Some women combine the two, and others juggle them, along with families and a host of interests. Whatever the case, to say such women multitask is an understatement. Ask anyone who’s served on a fundraising committee for a nonprofit or lived with someone who has.

Planning for a gala, which often begins as soon as the last event ends, involves countless meetings about everything from budgets to bands, sponsors to spritzers. And there’s the matter of theme. It might be built-in or maybe it’s born each year anew. Deciding how it’s conveyed can be a breakthrough moment.

Big-ticket events that take place annually and raise tens, even hundreds, of thousands of dollars for local charities and institutions easily take on a life of their own. And while the heart of the event is the cause itself, its backbone is the organizer, whether it’s a volunteer or a CEO.

To read the full article, click here.

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Hannah’s Buddies, the Tampa, FL chapter of Fight SMA, has set the date for the 2008 Hannah’s Buddies Charity Golf Classic. The ninth annual event is a fundraiser for spinal muscular atrophy research, and will take place on February 8 and 9 in Orlando, FL. It features a golf tournament during the day, a silent auction in the evening, and a concert at night. Already lined up for the concert is John Bell, lead singer of the band Widespread Panic (seen to the left with his goddaughter, Hannah from Hannah’s Buddies). Other musical acts are to be announced.

Here’s the preliminary schedule for the day:

February 8, 2008 at 12:30 p.m. - Shotgun start for the golf tournament at the Grand Cypress Golf Resort in Orlando, FL

February 9, 2008 at 4:30 p.m. - Dinner and silent auction at the House of Blues in Orlando

February 9, 2008 at 8:00 p.m. - John Bell and Friends Benefit Bash

Tickets for the concert are available at the House of Blues.

Check the Hannah’s Buddies chapter page for more details, coming soon!

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FightSMA New York’s Second Annual Gallery Walking Tour will take place on Saturday, Nov. 3 from 2-4 pm at some of Chelsea’s most innovative and inspiring galleries.

New York, New York (PRWEB) October 31, 2007 — Participants in an upcoming walking tour of art galleries in New York’s Chelsea neighborhood will not only learn about featured artists and the inner workings of art galleries, they’ll also raise money for a child-killing disease. The SMA Walking Tour, to be held on November 3, 2007, will raise funds for research into spinal muscular atrophy. The tour will visit six different locations over a two hour period, allowing participants a behind-the-scenes look at how art galleries operate.

Spinal muscular atrophy (SMA) is the leading genetic killer of children under two. The neuromuscular disease causes a wasting of the muscles, robbing its victims of the ability to run, walk, crawl, play and, in many cases, even breathe or swallow.

“I’d like to thank the participants of the walking tour in advance for their support,” said Kathy Tompkins, chair of FightSMA’s New York chapter. “It’s critical that we find a cure for this disease, particularly since research into SMA benefits dozens of other disorders.”

The event is organized by Andrew’s Buddies of New York, the New York chapter of international nonprofit Fight SMA. The tour will begin at 2:00 p.m. and end at 4:00 p.m. Participants will start at Rare Gallery (521 West 26th Street) and continue on to DAmelio Terras, Friedrich Petzel, Nicole Klagsbrun, Lombard-Freid Projects, and Postmasters Gallery. Each gallery director will speak about the style of the emerging artist featured in the current exhibition.

The suggested contribution is $25 per person.

For more information ont the walking tour, please visit www.fightsma.org or call Caroline Gibson at (804) 515-0080.

About Fight SMA:
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. For more information on spinal muscular atrophy and Fight SMA, please visit http://www.fightsma.org The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog, at http://www.fightsma.org/blog

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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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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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Fight SMA’s upcoming SMAsquerade: Make Tracks! event was featured this week in an interview on the national radio show At the Races with Steve Byk. The program airs daily on Sirius Satellite Radio channel 126, and is all about the world of horse racing. Our Steve Mullen was interviewed on Tuesday, September 25th about one of the many exciting items available during the upcoming SMAsquerade live auction — six corporate box seats at next year’s Kentucky Derby!

The 5th annual SMAsquerade event takes place on October 13, 2007, and is Fight SMA’s signature fundraiser. It will feature live and silent auctions of amazing items. To learn more, visit the event page on the Fight SMA website.

To listen to the At The Races interview, visit the archives page on the show’s website. The interview took place at the end of hour one.

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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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