Sacramento – Senate Joint Resolution 25, or SJR 25, which would declare the first weekend in June as Batten Disease Awareness Weekend, has cleared the Senate, Senator Scott Wilk, R-Antelope Valley, who introduced the resolution, announced Monday.
Wilk was joined by Santa Clarita area resident Chris Velona on the Senate Floor. Velona’s 14-year-old son Sebastian, a Stevenson Ranch resident, suffers from Batten Disease.
“This rare genetic disease robs children of their childhood and parents of their child,” Wilk said. “SJR 25 calls attention to the disease, the impact it has on families and hopefully compels the Federal government to continue funding research on this and other rare diseases.”
Batten Disease is a rare fatal disease that attacks the nervous system. It occurs in 2 to 4 of every 100,000 births in the United States. Symptoms first begin when a child is between the ages of 5 and 10 years of age. They include behavioral changes, seizures, blindness, intellectual decline, and loss of speech, usually leading to a premature death before adulthood.
SJR 25 recognizes researchers, organizations, medical professionals, donor and more who have continued to grow awareness for Batten Disease.
On average, the process to reach the correct diagnosis for a patient with a rare disease could take up to seven and a half years, visits with numerous physicians, and multiple misdiagnoses.
Chris Velona, a constituent of Wilk’s, brought the issue to his attention. Velona’s son Sebastian Velona, the namesake for Project Sebastian, a nonprofit oganization that works to expand the base of researchers and doctors looking for treatment or cure, was diagnosed with Batten Disease CLN8 at a young age.
“The federal government has not done enough to provide essential funding for rare diseases, such as Batten Disease, and 95 percent of the 7,000 rare diseases still have no FDA-approved treatment,” Wilk said.
“I cannot imagine the pain a family must endure watching their precious child suffer while doctors struggle to determine the cause,” he said. “It is crucial that the California State Senate call attention to organizations, such as Project Sebastian and the (nonprofit) Sebastian Velona Foundation, that serve to bring people together for the united purpose of actively pursuing improvements in their communities.”
“We have worked very hard to raise awareness of this horrible disease – for my son’s sake and for others just starting this journey,” Velona said. “We are so grateful for Senator Wilk’s efforts in moving the ball forward.
“Every day I have with Sebastian I treasure,” he said. “It is so important to help others afflicted with this disease and work to find treatment and hopefully one day a cure.”
Co-authored by Sen. Bill Dodd, D-San Francisco, SJR 25 now goes to the Assembly for consideration.
Read the entire resolution here.