On December 23rd, 2016, the FDA approved Spinraza (nusinersen), the
first treatment for Spinal Muscular Atrophy (SMA). While the treatment
seems to be very effective for most infants and children with SMA, the
pros and cons are less clear for those of us who are older.
Please join this group of teens and adults with SMA (loved ones
without SMA welcome) in talking about our thoughts, excitement, and
fears regarding the medical, emotional, and social ramifications
associated with choosing or not choosing to undergo this treatment.
This is NOT a technical, scientific, or medical gathering. This is an
opportunity to discuss how we feel, and possibly establish social
connections for those of us who want help from peers with logistics,
advocacy strategies, and/or emotional support.
Please DO NOT wear scented products. The Ed Roberts Campus is a FRAGRANCE-FREE building.
E-mail with questions at BayAreaSMA@gmail.com
RSVP at http://evite.me/G7DB5XePu5