Santa Barbara residents Bill and Victoria Strong left Sunday to begin driving a 5,000-mile journey with their 20-month-old daughter, Gwendolyn, who has spinal muscular atrophy, in an RV armed with banners, corporate sponsors and a call to action to end the paralyzing and terminal disease.
The “Sponsor-A-Mile to END SMA” drive, sponsored at $10 a mile, has a goal of raising $50,000. All proceeds will go to the Gwendolyn Strong Foundation, which seeks to shed light on the deadly childhood disease and to fund SMA medical research that specialists and the National Institutes of Health believe is within five years of a cure.
The road campaign is no small feat for a couple traveling with a paralyzed SMA child who uses a breathing machine and a feeding tube, and who has to be suctioned every few minutes because she can’t cough or clear her throat.
Gwendolyn was diagnosed with SMA at age 6 months. So far, she is beating the odds by surviving to age 20 months. The average age of death is 8 months, and almost all SMA Type 1 babies die by age 2.
The Strongs care for their daughter around the clock while devoting themselves to SMA awareness and medical research — realizing that the results of their efforts more than likely will not come in time to help their daughter.
The disease is caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1) that is responsible for the production of a protein essential to motor neurons. As a result, although born seemingly healthy, as SMA infants grow, their muscles degenerate, causing paralysis and ultimately death. SMA affects the ability to walk, sit, eat, breathe and even swallow, but the mind always remains unaffected.
More children die of SMA than any other genetic disease, and one out of every 35 people are genetic carriers, yet awareness of the disease is limited. The Strongs have set out to change that.
“Spinal muscular atrophy was chosen as a disease of priority because of the severity of the disease, its relatively high incidence and the fact that the gene has been identified and the gene product is known, resulting in leads on possible treatments,” according to the NIH. “There is a gap in funding to advance research on SMA, but if progress can be made, it would have implications for other diseases.”
The Strongs also have created a grassroots campaign with an online petition to support bipartisan legislation, the SMA Treatment Acceleration Act of 2009 (House Resolution 2149 and Senate Bill 1158). To date, the petition has more than 64,000 signatures.
The Strongs left Santa Barbara on Sunday en route to Las Vegas, Nev. (Monday through Wednesday), then Sedona, Ariz. (Thursday and Friday), Santa Fe, N.M. (Saturday and Sunday), Childress, Texas (June 29), Palestine, Texas (June 30-July 1), Vicksburg, Miss. (July 2-5), New Orleans, La. (July 6-9), Wharton, Texas (July 10), South Padre Island, Texas (July 11-14), Senora, Texas (July 15), El Paso, Texas (July 16), Phoenix, Ariz. (July 17) and Simi Valley (July 18).