Concert for a Cure

Andris and Nancy Dindzans found out their daughter Ariana had Type III SMA when she was 2 years old. A child with Type III SMA is generally able to stand and walk but may have difficulty with walking, or may fall more frequently. They may also have difficulty in getting up from sitting on the floor or a bent over position, and may be unable to run.

In June, 2004, Nancy, Andris and their two daughters, Maija, 6, and Ariana, 4, attended the FSMA Conference in Schaumburg, Illinois. Maija, who does not have SMA, was profoundly impacted by the conference. She met many of the SMA children and witnessed the enormous number of people who were brought together by the desire to cure this disease.

Ariana Nancy and Andris were encouraged and uplifted after attending the FSMA Conference and talking to many of the other families affected by this disease. FSMA is the largest international organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA. The annual FSMA conferences allow families and professionals’ hands-on techniques and family-to-family support, while also giving the children a great opportunity to make new friends and have a great time.

Ariana will be 8 years old in May. She is still walking and uses a mobility scooter to “walk” the 2 blocks to school. She loves flowers, swimming, singing, dancing, and playing on her DS. “I really want to find a cure for SMA so I don’t have to wear my ‘boots’ (DAFO braces), and to be able to run and keep up with my friends at recess,” Ariana says. Ariana is currently taking Depakote (Valproic acid) and Carnitine, resulting from her participation in a clinical trial funded by Families of SMA. When we go to University Hospital in Utah for the clinical trial follow up visits, Ariana gets so excited. She loves it there. Everyone treats us so well – Ariana calls it the “hotel” and actually looks forward to going. Ariana has shown some improvement, in that she doesn’t fall as often and her gait seems more stable. While there isn’t a huge gain in strength, her quality of life has improved dramatically just by not falling as much. This June, we will be attending the FSMA Conference in Boston. We have attended two other FSMA Conferences in the past. They provide a fantastic opportunity to learn more about SMA related issues, hear the latest updates from the researchers, and meet other families who are dealing with similar challenges. FSMA and the research they are funding have really given us hope that a cure may be found in time to keep Ariana walking, and give hope to so many others who are also fighting this disease.