Friends of Fight SMA Richmond had a wonderful time last weekend at BANK, in the city’s downtown.  Everyone was gathered for To Fight Life Through, Fight SMA Richmond’s Fall Celebration.  Below are some pictures from that celebration.  Click on the images to see a larger version.  To view more of Photographer Sam Perry’s pictures from the event, click here!

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.

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!

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.

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!

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.

If you’re in the Westfield, New Jersey area, or even if you’re not, you can participate in an event that puts the “fun” in “fundraiser”. Patrick’s Buddies, a chapter of Fight SMA based in New Jersey, is holding the “Fight SMA Rubber Duck Race” on Sunday, May 6, from 11 a.m. to 2 p.m. to benefit spinal muscular atrophy research and Fight SMA. The 25 fastest ducks in the race at Mindowaskin Park in Westfield will receive an iPod shuffle (all the better to listen to the Fighting Back Podcast!) Ducks are $5 each, or a “Quack Pack” of 5 ducks for $20. If you want to improve your chances, a “Flock” of 12 Ducks is only $50, and a “Gaggle” of 25 ducks for $100. For more information, contact Ellen Devin at ej-devin@comcast.net.

Two charity events held nearly 150 miles apart recently spelled success for research into spinal muscular atrophy (SMA). The events raised a total of approximately $70,000, thanks to the dedication and hard work of volunteers from Georgia and Alabama. The volunteers were working to fund Fight SMA, an international organization dedicated to finding a treatment or cure for SMA. FightSMA will direct those funds to researchers doing work that could eventually spell the end of the disease that kills more children under two than any other genetic disorder.

The events, Birmingham SMAsquerade 2007 and SMAsquerade SMArdi Gras in Atlanta were each held on February 17, 2007. “SMAsquerade” is a signature fundraiser for FightSMA, and similar events have been held around the country by other chapters of the organization

“We’re very thankful for what these dedicated families and supporters from Atlanta and Alabama have accomplished,” said FightSMA president Martha Slay. “The hard work they have invested in these two events paid off, and will benefit everyone working to fight spinal muscular atrophy.”

In Atlanta, the event was held at the Trolley Barn in historic Inman Park. Guests arrived via trolley provided by Chattahoochee Trolley Company. They were entertained by honorary emcee Alpha Trivett from the radio station WSB FM and by music from Atlanta’s own Livin’ Large. The signature piece from the night’s silent auction was a spectacular multi-media painting by author, artist, and SMA dad Danny Schnitzlein.

Meanwhile, in the next state, organizers of Birmingham SMAsquerade were not to be outdone. This event was held at Ted’s Garage, a 1920’s Warehouse with cool classic and vintage cars on display. Guests enjoyed hors d’oeurves, a silent auction, and music by Lava Lamp, the preeminent 70’s band in the southeast.

Planning for the SMAsquerade event to be held in Richmond, Virginia is already underway. The theme this year will be SMAsquerade: Make Tracks! It is scheduled for October 13 in the Thalhimer Pavilion at Science Museum of Virginia.

Here’s a link to this release on PRWeb.
Media contact:
Steve Mullen
EndGame PR for Fight SMA
(804) 382-0017
steve @ endgamepr.com