News and Events
Flu Season 2010
As the Fall and Winter season approaches e would like to recommend that all patients with SMA recieve the Flu and H1N1 vaccines. Please be sure to contact our local pediatrician's office to find out when they receive these vaccines and ask to be placed as high priority to receive the vaccines.
August 10, 2009
SMA Walk n' Roll!
The Utah chapter of Families of SMA is hosting the First Annual Walk -N- Roll and Carnival. The event will be held at Park City's Willow Creek Park on Saturday, August 29th form 11 AM to 3 PM. Come play games, eat snow cones, cotton candy, play in bounce houses, ride a pony, get your face painted, join in a raffle and BBQ with you local SMA families.
Utah's FSMA chapter also has their website up and running! Check it out at www.utahsma.showitsite.com
Register online at www.utahsma.showitsite.com early to guarantee your official Walk-n-Roll T-shirt!
July 16, 2009
Check out these upcoming REAL Salt Lake Soccer and SMA events!
Deja Vu Prom Night: Dress like the year you graduated!
an SMA fundraiser:
Come together for a cocktail social, delicious dinner, DJ raffle, fireworks and more! All proceeds will go toward Goals for Greatness to Grant Opportunities Against Life Struggles. Make your reservations today!
Sunday August 16, 5-10pm
at La Caille Resteraunt
9565 Wasatch Blvd, Sandy Ut
Presented by G.O.A.L.S for Greatness
www.goalsforgreatness.com
and Frenzy Bridal and Chic Boutique
Click here for a Reservation Form and more information!
We are please to announce the 2nd Annual SMA Friends and Family Night with Real Salt Lake!
Come see your REAL Salt Lake square off against the Chicago Fire September 12th at the new Rio Tinto Stadium!
REAL Salt Lake has once again most graciously donated 50 wheelchair/ADA seats for SMA kids to come see the game. Additional seats will be a discounted rate of $15.00!
Please contact Clinical Study Coordinator, Benjamin Chisum at benjamin.chisum@genetics.utah.edu for more information.
REAL Salt Lake Team 2010 Calendar
REAL Salt Lake will be putting together a 2010 team calendar. All proceeds of these calendars will go toward benefiting SMA kids. The calendars should be available by October.
Please see www.goalsforgreatness.com for more information.
June 30, 2009
June 8, 2009
New kids mobility distribution company available in the US!
MobilityKids.com is now officially distributing Pathera's kids line wheelchairs. Mobilitykids also sells other European pediatric equipment with the latest engineering. They are currenlty working on a supine platform prototype for the Gallileo, a machine that stimulates muscle growth and helps bone densitiy (an approved therapy in Germany for kids and adults with neuromusuclar diseases). It will be a more affordable version than the German Gallieo.
Check out their website at http://www.mobilitykids.com
April 30, 2009
Swine Flu Outbreak
In light of the recent out breaks of Swine Flu we'd like to provide you with some helpful and informative links:
Click here to watch a video from the CDC on how to recognize the signs and symptoms of Swine Flu
Click here to see some key facts about Swine Flu from the CDC
For local Utah patients, Click here for local information about Swine Flu
April 9, 2009
Families of Spinal Muscular Atrophy have announced a new support program for newly diagnosed SMA Families.
Through generous donation and sponsorships, Families of Spinal Muscular Atrophy is pleased to announce a new program to assist newly diagnosed SMA families. FSMA will now cover the registration fees for the Family and Professionals SMA Conference for all newly diagnosed since the last meeting in 2008.
Please click here to learn more about Families of SMA and the annual SMA Conference!
March 25, 2009
Utah FSMA Chapter Meet & Greet: Saturday May 9th, 6:30 - 8:30 pm
The newly formed Utah Chapter of Families of SMA would love to invite parents, families and friends of those affected with Spinal Muscular Atrophy to an open house at the home of Shane Barber, president of the Utah chapter of FSMA. The Utah Chapter is excited about sharing some great fundraising ideas and they need your feedback and help. Committees are needed for each event in order to make them a success. With a little hard work and commitment, we can make these annual events. Together, we can make the Utah FSMA community strong and helpful by spreading awareness and raising funds that will lead to a cure for SMA!
Heavy appetizers and beverages will be served. Please help make this a great evening by coming together, sharing ideas and coming one step closer to the cure!
For more information regarding location please contact: benjamin.chisum@genetics.utah.edu
March 10, 2009
Please Attend the Annual Agency Information Fair
For people with disabilities and their families living in the Salt Lake Valley:
Day: Tuesday, April 28, 2009
Time: 6:00 to 8:00 pm
Place: Highland High School
2166 South 1700 East
Salt Lake City, Utah
This is an opportunity for you to learn which services are available to assist you and family members with disabilities. OPEN HOUSE! Feel free to come and browse. All age groups and family members are welcome!!! Various agency representatives will answer questions you have about:
ASSISTIVE TECHNOLOGY
EMPLOYMENT
ADVOCACY
RESIDENTIAL PROGRAMS
FAMILY SUPPORT PROGRAMS
LEGAL ISSUES
RECREATION AND SPORT PROGRAMS
HOME HEALTH CARE
SOCIAL SECURITY
MEDICAID
GUARDIANSHIP
NATURAL SUPPORTS IN THE COMMUNITY
INDEPENDENT LIVING
TRANSITION PROGRAMS
Co-sponsors are:
Division of Services for People with Disabilities (DSPD), Central Region
Granite School District
Jordan School District
Murray School District
Salt Lake School District
Salt Lake Community College
Utah State Office of Education
If you have any questions, please call Nancy Valdez with DSPD at 801-264-7639, or Kath Tatum with Salt Lake City School District at 801-578-8429. BRING A FRIEND!!! MARK YOUR CALENDARS!!!
October 30th, 2008
REAL Salt Lake makes a special visit to Primary Children's Hospital
Nat Borchers of Real Salt Lake soccer and a host of his team mates made a special Halloween appearance at Primary Children's Medical Center to meet with local SMA families. The Real players visited with families and kids, handed out autographed gifts, and performed some amazing soccer tricks. We'd like to send our heartfelt appreciation to all the families and soccer players who attended.
September 30th, 2008
SMA family gets an Extreme Home Makeover!
It's our pleasure to announce that ABC's Extreme Home Makeover recently 'made-over' an Ohio SMA family's home. The episode will be premiered on October 5th at 6:00 p.m. Mountain Standard Time. Please tune in!
The Barber's, a local SMA family, will be hosting a viewing party at their restaurant Bandits' in Park City. Dinner will be ready at 5:30 for those who want to arrive early, get a definite seat, and meet with other families. Pulled pork sandwiches or beef brisket will be served with coleslaw and ranch beans for $12 for adults and $5 for children. This price also includes a fountain drink.
Seating is limited so please RSVP Sofya Sadiq ASAP at ssadiq@genetics.utah.edu
We hope to see you there!
Directions to Bandits':
Take I 80 East
Exit Park City (224)
Follow 224 all the way into town
Turn left at Deer Valley Drive (just past Albertson's on your left)
Turn right onto Main Street
Bandits' is located at 440 Main Street, half way up on the left, just above the post office.
Check out a preview to the show here: Aker's Extreme Home Makeover
September 22th, 2008
Nat Borchers meets Carter, Tabitha, and Mitch! Check it out here!
We'd like to thank all of the families who came out to Rice Eccles Stadium and braved the rain with us Saturday, at the Real Salt Lake soccer game. A special thanks to Nat Borchers and Real Salt Lake for hosting SMA night at the game, and generously donating more than 100 tickets to SMA families. Mr. Borchers even took time after the game to personally meet many of the families, sign autographs, and pose in some terrific photos. His time and efforts in helping raise community SMA awareness is truly appreciated.
Karson Riggs was also highlighted at the game along with a special dedication. Unfortunately, Karson has been in the hospital for an extended period of time, but his family was out in force enjoying a great night of soccer. Thanks again to everyone who participated. Hope to see you next time!
September 15th, 2008
The Swoboda team was please to host Dr. Mary Schroth, world class SMA Pulmanologist from the University of Wisconsin School of Medicine this last week. Mary is a pediatrician with special expertise in the care of SMA patients. She had the opportunity the opportunity to meet with a number of SMA patients and lend her expert advice regarding respiratory care, and bipap use. On behalf of our families and staff we would like to extend our appreciateion forDr. Schroth's time and dedication to finding a cure for SMA.
September 5th, 2008
It is our pleasure to announce that Nat Borchers, of Real Salt Lake Soccer, will be sponsoring a "SMA Night" during their game Saturday, September 20th at 7:00 pm, versus the Chivas USA. Mr. Borchers has graciously provided free tickets for SMA families that would like to come out to the game and support the SMA community and Real Salt Lake soccer.
If interested, please contact our office as soon as possible so we can secure tickets for you and your family at (801) 585-6873 or email Benjamin Chisum at benjamin.chisum@genetics.utah.edu
Real Salt Lake currently competes at Rice Eccles stadium located between 1300 East and Guardsman Way on the north side of 500 South. For more information please visit Real Salt Lake's web site at: http://real.saltlake.mlsnet.com
Nat Borchers, #6 of Real Salt Lake.
Mr. Borchers was acquired by RSL in February of 2008, but he has been active in the SMA community much longer than that. His godson and biggest fan Seth, a type II SMA child, made a huge impact on Mr. Borchers' life. "He [Seth] would attend every practice and every game. It was inspiring to see his dedication and equally inspiring was his positive attitude towards the disease."
Since his arrival in Salt Lake City Mr. Borchers has been a wonderful proponent for helping raise SMA awareness and we look forward to seeing him and RSL compete on the 20th!
