Senate OKs resolution on Batten Disease Awareness Weekend

Sebastian Velona, 14, holds up a banner for the nonprofit Project Sebastian that is working to educate the public about Batten Disease and to help find a cure. Courtesy Photo

The California Senate approved a Senate Joint Resolution on Tuesday that declares the first weekend in June Batten Disease Awareness Weekend, an effort led by State Sen.Scott Wilk, R-Antelope Valley.

Batten Disease is a rare fatal disease that 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.

SJR 25 recognizes researchers, organizations, medical professionals, donors, 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.

Santa Clarita area resident Chris Velona, whose son suffers from Batten Disease, joined Wilk on the Senate floor to speak on the issue. Velona had brought the issue to Wilk’s attention with Project Sebastian, an organization named after Velona’s son that works to expand the base of researchers and doctors looking for treatment or cure.

Sebastian Velona was diagnosed with Batten 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,” said Wilk. ” It is crucial that the California State Senate call attention to organizations, such as Project Sebastian and the 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. We are so grateful for Senator Wilk’s efforts in moving the ball forward,” Velona said. “Every day I have with Sebastian I treasure. It is so important to help others afflicted with this disease and work to find treatment and hopefully one day a cure.”

SJR 25 now goes to the Assembly for consideration.

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