The H1N1 flu has added even more stress to a season that is already very tense for families affected by spinal muscular atrophy (SMA) - cold and flu season. Here are a couple of notes that will hopefully help these families.

Doctors have recommended that SMA patients get both the regular and swine flu shots.

MDA has advised that “the intranasal form (sprayed into the nose)…variety of the vaccine is not recommeded for those affected by neuromuscular disease since it contains an attenuated (weakened) form of the H1N1 virus.”

Dr. Kathy Swoboda, of the University of Utah, has recommended that parents of “fragile children with SMA to get a prescription if possible for tamiflu, to be started at the earliest onset of flu-like symptoms” and that “those vulnerable individuals who are exposed to actively infected family members living within a household should begin treatment as well.” She also recommended that families “consult with your doctor regarding individual specific circumstances.” (For more information, click here. SMASpace membership and login required.)

Additional resources for getting through this flu season:

• CDC’s 2009 H1N1 Flu (Swine Flu)
• Action Steps for Parents of Children at Higher Risk for Flu Complications
• MDA’s H1N1 Resource Center
• Flu.gov
• H1N1 Flu Self-Evaluation
• CDC Says “Take 3” Actions To Fight The Flu

The Virginian-Pilot newspaper printed a story Sunday about the family leading FightSMA’s chapter in Virginia Beach, Virginia. The article touched on aspects that many families affected by spinal muscular atrophy (SMA) face: the shock of the diagnosis, the struggle to fight the disease, and the loss of a child. But, the article also recognized the promise and hope brought about by research being done around the country and the need for the fight to continue.

The Saville Family openly speaks about their experience of learning their daughter Morgan had SMA, of raising awareness and funding, of seeking treatment, and of her death in 2005. They also discuss how their efforts to defeat SMA have been renewed following their new baby’s birth, diagnosis, and enrollment in Dr. Kathy Swoboda’s pre-symptomatic study, funded in part by FightSMA. Stacy Saville and her son, accompanied by Virginian-Pilot photographer Genevieve Ross, attended the FightSMA Annual Conference in April and traveled to Capitol Hill to advocate for the SMA Treatment Acceleration Act.

To read the full article, click here. Below is a lovely slide show that the paper also put together.

FightSMA is funding a new study called “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” or “STOP SMA” being conducted by the laboratory of Dr. Kathy Swoboda at University of Utah School of Medicine. The study will assess the safety, tolerability and potential efficacy of sodium phenylbutyrate (NaPB) in presymptomatic infants genetically confirmed to have SMA.

Sodium phenylbutyrate (NaPB) is a medicine that has been used for many years to treat patients with urea cycle disorders. Recent research suggests that NaPB may be able to prolong survival in animal models of motor-neuron disease. In addition, pilot data in human infants have suggested a possible benefit of early administration of NaPB. Since significant motor-neuron loss occurs in the first few weeks to months of life in the most severely affected infants, the earlier that NaPB treatment can be started, the greater the potential benefit in delaying onset and lessening severity of SMA symptoms.

For more information about this study, including eligibility criteria, and for links to other clinical trials, please visit the FightSMA website.