Dr. Mary Schorth is widely known and respected by those in the spinal muscular atrophy (SMA) community. She is a Pediatric Pulmonologist at the University of Wisconsin’s American Family Children’s Hospital and is the Director of the Pediatric Pulmonary Center Training Grant. Building strong bonds with families around the country, she has been instrumental in the development and advancement of respiratory care for children with spinal muscular atrophy. According to Dr. Schroth, “if they get good respiratory care early on, they will live a long life.”

American Family Children’s Hospital recently profiled Dr. Schroth’s work with Sophia Doebbert, one of her patients with type 1 SMA. Sophia’s parents credit Dr. Schroth with providing them with the hope and the tools to care for their daughter, who is now eight years old. Click here to view the video.

In addition to treating SMA patients, Dr. Schroth has managed clinical trials, participated in the “Thriving with SMA” panel at the FightSMA Annual Conference, and contributed to the development of the Consensus Statement for Standard of Care in Spinal Muscular Atrophy. She also developed a pediatric multidisciplinary clinic for patients with neuromuscular disease, incorporating pediatric rehabilitation medicine and pediatric orthopedic surgery.

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.

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

The 2009 version of “The Good Fight”, FightSMA’s Annual Spinal Muscular Atrophy Conference, wrapped up on Tuesday, April 28 and it was another successful year!

Here are a few of the highlights:

• 20 researchers and two additional graduate students from the National Institute of Neurological Disorders and Stroke (NINDS) were in attendance.

• Three of the attending scientists joined five additional doctors and healthcare professionals in an educational panel for attendees of the “Families and Friends Conference.”  This year’s panelists were Thomas Crawford, M.D., Tina Duong, MPT, Craig P. Eberson, M.D., Sally Evans, M.D., Sarah Feasel, MEd, RD, LD, CNSC, Mary Schroth, M.D., Kathy Swoboda, M.D., and Alex MacKenzie, M.D., Ph.D.

• On April 28, many of the families, friends and researchers descended on Capitol Hill to advocate for Spinal Muscular Atrophy and the SMA Treatment Acceleration Act, visiting the offices of more than 65 Congressional Representatives.  After a productive day, the SMA community was thrilled to learn that HR 2149, the SMA Treatment Acceleration Act, had been re-introduced in the House of Representatives.  FightSMA thanks all of our families, friends and researchers for kicking off the 2009 advocacy efforts in a big way!

• For the first year, FightSMA offered a webinar of the Families and Friends panels.  The webinar was a success, with 30 participants from 13 U.S. states and a total of four countries.  Those who utilized the webinar said the experience was great!

We’re thankful for the contributions of everyone who made this conference a success, and for our sponsors, who made it possible: PTC Therapeutics, Genzyme, Hill-Rom Company, ISIS Pharmaceuticals, Psychogenics, Permobil, The Medi-Kid Co., and Exceptional Parent Magazine.  A special “thank you” goes to Hill-Rom Company and Genzyme, which not only sponsored the event, but also sent representatives to attend the Families and Friends Conference!