One Year Since I Attempted Stand-up Comedy

The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open mic night. My local comedy club does open mic sessions every week, and since I have a few comedian friends who had been encouraging me to try it out, I figured I could handle a few […]

Cure SMA to Host Webinar Today on Spinraza Access

Cure SMA will host a webinar on spinal muscular atrophy (SMA) today at 1 p.m. EST. The event focuses on access to Spinraza — the only U.S. government-approved therapy to treat the disease, CureSMA said in a press release. Topics to be covered include the current status of dosing in individual U.S. states and information on where the […]

Saying No to Shame, Embarrassment and Difficult Physical Activities

I’m writing this in the car again, off to Iowa for a weekend of family visits. It was a busy week, so I’m looking forward to a couple of hours of driving. For me it is a chance to catch up on things: Grad school applications, classwork. Maybe, if I’m lucky, I’ll be able to […]

Life Before and After Spinraza, Part 2

Second in a series. Read Part 1 here. There’s a certain significance that Dec. 4 holds in my life. What started as an ordinary day morphed into the day that forever changed the course of my life. That’s just how life works in its mysterious ways. The biggest days of our lives are often days […]

3 Pieces of Advice for Acquiring a New Wheelchair

Purchasing a new wheelchair is no easy feat. In addition to getting your insurance provider to cover the cost, you also have to make sure that the chair you are acquiring will meet your needs and has all of the proper accommodations. Read this article from the Washington Post by SMA author Ben Mattlin that explains […]

5 Tips for Going to School When You Have SMA

Living with SMA no doubt presents numerous challenges, but as they say, “where there’s a will, there’s a way.” A good education is just as important for SMA patients as it is for able-bodied students. Many go to public school from Kindergarten to high school, and go on to graduate from university or college. If […]

Adjusting to Overnight Feeding and More Solid Foods

Ella has lost five pounds over the past month, which has been the result of a dietary change. Before this change, she was primarily getting her nutrition via G-tube, while on an amino acid diet (known as an AA Diet) consisting of several nourishing liquids (water, almond milk, white grape juice, and Pedialyte), Ubiquinol, levocarnitine, […]