In October, a workshop and a course will be held that may be of interest to researchers and medical professionals involved with spinal muscular atrophy (SMA).

At the beginning of October, the Center for Continuing Medical Education at Columbia University in New York will hold a course to update clinicians and caregivers about therapies in development, the new consensus on patient management, and ways to participate in upcoming clinical trials. Supported by a grant from the New York-based SMA Foundation, “Recent Advances in SMA and Other Pediatric Neuromuscular Diseases” will be held October 2nd and is “an intensive one-day course designed for medical professionals, including physicians, nurses, genetic counselors, physical, occupational, and respiratory therapists, with an interest in pediatric neuromuscular diseases.” For more information about the course, click here.

Later in the month, a three-day workshop (October 18-20) about conducting research on rare diseases and orphan products will be held in Rockville, Maryland. Sponsored by the Food and Drug Administration (FDA), agencies of National Institutes of Health (NIH), the National Organization for Rare Disorders (NORD), and Duke University Medical Center, the “Accelerating Therapies for Rare Diseases” workshop “focuses on FDAs regulatory requirements and the clinical trial issues that are especially relevant to rare disease research.” Speakers will include members of academia, government agencies, and the private sector. For more information about the workshop, click here.

Thank you to everyone who came out for 4th Annual Rubber Duck Race, organized by Patrick’s Buddies/FightSMA New Jersey, Sunday, May 23, 2010 in Westfield, New Jersey’s Mindowaskin Park. The crowds turned out for an awesome race and helped raise funds to support the search for a treatment and cure for Spinal Muscular Atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death.

Special thanks to the members of the Rutgers Scarlet Knights football team who showed their support for the fight against SMA and to the volunteers who made the event possible.

Pictured above: Patrick with Eric LaGrande and Mohammed Sanu
from the Rutgers Scarlet Knights

Check out more pictures and video from the Duck Race on the Westerfield Patch’s website.

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In this episode of Fighting Back Podcast, we talk with Chad Boerst from Hill-Rom.  Hill-Rom is a sponsor of the 2010 FightSMA Annual Conference, in Washington D.C.  The company was also a sponsor of the 2009 conference.

Chad tells us about the products that Hill-Rom manufactures and sells that help SMA patients and families, and why Hill-Rom is such a big supporter of FightSMA.

To listen to our interview with Chad, can use the Flash mp3 player above.  You can also load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

Friends old and new gathered on November 21, 2009 at Richmond’s newest waterfront restaurant, the Boathouse at Rocketts Landing, for the 2009 FightSMA Fall Party to celebrate and help raise awareness and critical research dollars for spinal muscular atrophy.

Guests at the party enjoyed live music by local Richmond favorite, DJ Williams Projekt, while sipping cocktails and enjoying Boathouse specialty hors d’oeuvres. When they weren’t on the dance floor, guests were able to bid on a robust variety of silent auction packages provided by:

• Plus1Tickets
• By Invitation Only
• DowntownShortPump.com
• Lemaire
• Roan boutique
• Heist jewelry
• MacLaren Jewelers
• real life studios
• Hayes & Fisk: The Art of Photography
• Appliance Solutions
• Visual Arts Center of Richmond

The Boathouse at Rocketts Landing and Shockoe Bottom’s Frame Nation provided gift certificates for the raffle.

When guests at the Fall Party wanted to let their hair down, they grabbed their friends and climbed into the on-site photo booth provided by Virginia Photo Booths and More to create a memorable keepsake to take home from the party. One guest said, “the photo booth was such a cute touch and so nice that it was customized with the event info.”

FightSMA President and Co-Founder, Martha Slay, briefly addressed the crowd to thank them for their support, update them on the progress being made, and encourage them the continue their efforts. A portion of her speech can be heard in the video recap of the event.

It was a fantastic and fun evening, and most importantly, for a wonderful cause: to help fight spinal muscular atrophy. Another attendee declared, “lovely evening, gracious hosts, beautiful people, a gorgeous setting and a great cause. The perfect evening. You have done it again!”

Still photography provided by Sam Perry Photography.

Saturday, September 26, 2009 was a spectacular night in Toronto and an even greater success for FightSMA’s Canadian chapter Tori’s Buddies.

A Casino Royale theme transformed the Fermenting Room at Toronto’s Historic Distillery District. It was a great room, and the company even better. A heartfelt thank you to all of the 300 supporters who attended the 10th annual FightSMA Canada Gala. It was a “full house” ultimately “betting” that we will one day “hit the jackpot” and find a cure for Spinal Muscular Atrophy (SMA). We know that thanks to these supporters, we are raising awareness and the needed funds for the research that will get us to that goal. Because of the generous donors, we have surpassed a very impressive $175,000 so far, and we are still counting. Many thanks to our lead Sponsor CML Healthcare and our other sponsors Wilson Truck Lines, Paramount Pallet,TD Securities and PWC. We hope to see you all again next year.

The pictures are fabulous and all the fun can be viewed at www.hadaball.com. Just click on “Events,” then select “SMA Gala.”

A heartfelt “Thank You!” from Tracy, Shawn and the FightSMA Board of Directors.

FightSMA is proud to announce the dates of the 2010 Annual Conference: The Good Fight. The Researchers Conference will be held April 25-26 and will gather select researchers and scientists in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue. The Families and Friends Conference will be held April 26-28 and will include a lay-friendly science briefing with Q&A, “Thriving with SMA” panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.

More information will be posted as it is available on the conference’s webpage: www.fightsma.org/index.php?annual_meeting_2010. For more information about past FightSMA conferences or about spinal muscular atrophy (SMA), visit www.FightSMA.org.

On August 15th, the University of Wisconsin Pediatric Pulmonary Center is sponsoring a free workshop open to parents, family members, and caregivers of children with spinal muscular atrophy (SMA). For more information, click here to view the original blog post.

But what about families who cannot travel to the workshop? Justin Kuester, a driving force behind the workshop, has been working with Dr. Schroth’s team to see if webconference capabilities could be secured to open up the SMA Education Day to people who cannot attend in person. And, he has been successful!

To access the webconference, visit http://wisc.na4.acrobat.com/sma/ at the time of the workshop. Justin suggests that interested families test the URL early to ensure that their browsers are able to connect and install any plugins as necessary.

Earlier this year, the community of Mechanicsville, Virginia came together to celebrate nine successful years of raising funds for the fight against spinal muscular atrophy (SMA), led by the hard work and determination of Carice Smith. After getting over the initial shock of her son Andrew being diagnosed with SMA, Carice has said that she knew she had to take a pro-active stand. This stand took the form of the “Strike Out SMA Bowlathon” which was held annually, missing only one year due to illness. For the 10th year, family and friends decided to throw a party to honor the work of Carice, Andrew, and all their supporters - and to raise money to support SMA research.

Check out the slideshow of pictures from the party below, and to see the list of generous corporate sponsors and learn more background information about the event, click here.

SMA Education Day: Clinical Updates for Parents of Children with SMA

The University of Wisconsin Pediatric Pulmonary Center is sponsoring a free workshop open to parents, family members, and caregivers of children with spinal muscular atrophy (SMA). Presenters Mary Schroth, MD; Karen Patterson, PT; Krista Kienitz, OT; and Mary Marcus, MS, RD, CSP will discuss topics including “Pulmonary Issues in SMA,” “Physical Therapy/Occupational Therapy - What’s Best for Your Child,” and “Nutrition Issues in SMA.” Continental breakfast and lunch included.

Time: August 15, 2009 from 8:30am to 1:30pm

Location: University of Wisconsin Hospital and Clinics, Room G5/152

Registration Deadline: July 31, 2009

To register for the workshop, email Kate Kowalski, MSSW, Administrator and Family Involvement Faculty at kmkowalski@pediatrics.wisc.edu with the following information:

Attendee’s Name(s)
Child’s Name
Address
Home Phone Number
Cell Phone Number
Email Address

Patrick’s Buddies’ 3rd Annual Rubber Duck Race was a tremendous success! Held Sunday, June 7, 2009 at Mindowaskin Park in Westfield, NJ, the race is estimated to have raised between $13,000 and $14,000 for spinal muscular atrophy (SMA) research. According to Maureen Higgins, head of the New Jersey chapter of FightSMA, the generosity shown by their supporters is extremely impressive given the charities in their area have been suffering during the economic downturn.

Recognition must be given to the employees of PTC Therapeutics for their tremendous support. Headquartered in South Plainfield, NJ, they had a “gaggleometer” in the office to tally their donations, which reached close to $1,000 from the individual employees! One of the PTC scientists who works on SMA, Amal Dakka, attended the event and helped Patrick give the signal to dump the ducks in the water at the start line. Maureen said, “I was very excited to have their support. It’s great that our supporters can see an actual scientists who benefits from this crazy duck race we throw every year!”