header image

[Sign Up Now] to Receive Our FREE Daily SCVTV-SCVNews Digest by E-Mail

Inside
Weather
Santa Clarita CA
Mostly cloudy
Mostly cloudy
55°F
 
Calendar
Today in
S.C.V. History
January 29
1945 - Local residents vote 1,184 to 7 (correct, seven) to create SCV high school district [story]

students


| Thursday, Aug 2, 2018
Sebastian Velona, 14, of Stevenson Ranch, suffers from Batten Disease CLN8, a rare genetic disorder that attacks childrens' nervous systems and is usually fatal before adulthood.
Sebastian Velona, 14, of Stevenson Ranch, suffers from Batten Disease CLN8, a rare genetic disorder that attacks childrens' nervous systems and is usually fatal before adulthood.

 

The Project Sebastian nonprofit organization dedicated to finding a cure for Batten Disease will hold a wine gala and silent auction fundraiser at Salt Creek Grille on Wednesday, Sept. 5 starting at 6:30 p.m.

During the event, doctors will speak about the debilitating neurological disease that targets children and is usually fatal before a victim reaches adulthood.

There is no cure for Batten Disease. However, recent developments in gene replacement therapy have shown promise.

“Project Sebastian was created to help my son Sebastian and other children have a chance at a full life,” said Chris Velona, whose son is now 15 and rapidly losing his ability to talk and walk as Batten Disease CLN8 degenerates his nervous system.

“Batten Disease destroys the body from the inside,” Velona said. “First, it masks itself as another disease, causing a misdiagnosis and loss of valuable time. This disease takes the eyesight, speech, cognitive abilities, causes seizures, the inability to walk, eat then puts you into a wheelchair with a feeding tube only to die a painful death. All before you can drive a car.

“In some cases like Sebastian’s, late-onset, data show us he will not live past 20 years of age,” Velona said. “So as you can read, the issue is time. This genetic illness waits for no one or any cure. It is relentless and will not stop until the child dies.”

Funds raised at the Salt Creek Grille event will help pay for a clinical trial of gene replacement therapy — replacing genes affected by Batten Disease with healthy genes.

“We hope that this current trial will change all this and gene therapy will eradicate this disease in the future,” Velona said. “My son and two other boys are involved in the trial but the cost is a staggering $3.5 million. With no insurance to cover it, we are fundraising as many times as possible.”

Salt Creek Grille Valencia has generously offered the patio for our event,” Velona said. “I have 120 tickets to sell at $100 apiece and hope to sell it out. Any and all monies go to continue funding this trial.”

Sponsorship Opportunities
Velona is seeking additional event sponsors.

All-In Sponsorship – $2,500 (1 available)
• Company name/logo on all event material
• Company name/logo on event website
• 4 free entries into the wine gala

Food or Beverage Sponsorship – $1,000 (2 Available)
• Company name/logo posted at all food/beverage tables.
• Company name/logo on event website
• 2 free entries into the event

Dessert Sponsorship- $750
• Company name at dessert table
• 1 free entry into the event

Gift Bag Sponsorship – $500 (1 available)
• 1 free entry into the event

“We are asking local business owners to donate any item that may generate high interest from our bidders to help make our event a success,” Velona said. “Your contribution will not only benefit Sebastian, but also many other children in this trial. They will have the opportunity for a full life.”

Potential sponsors and/or donors may call Velona directly at 661-414-4856.

Check out the Facebook event page for updates.

For more information, visit the Project Sebastian website.

Comment On This Story
COMMENT POLICY: We welcome comments from individuals and businesses. All comments are moderated. Comments are subject to rejection if they are vulgar, combative, or in poor taste.
REAL NAMES ONLY: All posters must use their real individual or business name. This applies equally to Twitter account holders who use a nickname.

0 Comments

You can be the first one to leave a comment.

Leave a Comment


SCV NONPROFIT LINKS

NONPROFIT HEADLINES
Friday, Jan 28, 2022
Carousel Ranch will be offering a special "Val-o-grams" Valentine’s Day-themed fundraiser to benefit the programs at the therapeutic riding ranch.
Thursday, Jan 27, 2022
The public is invited to an opening reception at the Santa Clarita Artists Association Gallery on Friday, Feb. 18, from 5 p.m. - 8 p.m.
Tuesday, Jan 25, 2022
The Zonta Club of Santa Clarita Valley’s Empower Hour will be held virtually at noon, Saturday, Feb. 5 on Zoom.
Friday, Jan 21, 2022
The Zonta Club of Santa Clarita is holding a "Yum-Raiser" for Valentine’s Day. Safely and easily send boxes of chocolate for delivery to your friends and family from See’s Candies.
Thursday, Jan 20, 2022
Evelyn Ku, MSN, RN, has been named Vice President and Chief Nursing Officer at Henry Mayo Newhall Hospital.

Latest Additions to SCVNews.com
1945 - Local residents vote 1,184 to 7 (correct, seven) to create SCV high school district [story]

students
Los Angeles County Department of Public Health officials confirmed Friday 101 new deaths and 23,796 new cases of COVID-19 countywide, with 67,608 total cases in the Santa Clarita Valley.
Friday COVID Roundup: Employers Now Required to Provide Better Masks, More Covid Testing
To celebrate the Opening Ceremony of Beijing 2022 winter games, join your friends and neighbors for a free sit-in movie – Disney’s “Miracle” – Thursday, Feb. 3 at 6 p.m at The Cube.
Feb. 3: Parking Lot Screening of ‘Miracle’ at The Cube
Three California Institute of the Arts alums were named USA Fellows by United States Artists, an organization that supports artists and uplifts their essential roles in society.
CalArtians Named to United States Artists’ 2022 Fellowship Class
Carousel Ranch will be offering a special "Val-o-grams" Valentine’s Day-themed fundraiser to benefit the programs at the therapeutic riding ranch.
Val-O-Grams Fundraiser to Benefit Carousel Ranch
1850 - Death Valley '49er William Robinson dies in Soledad Canyon from drinking too much cool water [story]
Leaving Death Valley
Following a nationwide search, Paseo Aquatics, a premier USA-Swimming Sanctioned club located in Santa Clarita, has landed Kameron Kennedy.
Level 4 Coach Kameron Kennedy Joins Paseo Aquatics
College of the Canyons women's basketball, winners of four straight, checked in as the No. 8 ranked team in the state in the first California Community College Sports Information Association (CCCSIA) poll of the 2021-22 season, released on Jan. 26. 
Lady Cougars Ranked 8th in New Statewide Poll
The city of Santa Clarita is pleased to announce that the Santa Clarita Valley (SCV) Trail Users volunteer group will help build out a scenic portion of the new Crest to Coast Trail in Newhall.
Local Trail Users Volunteer Group Assisting New Crest to Coast Trail
The public is invited to an opening reception at the Santa Clarita Artists Association Gallery on Friday, Feb. 18, from 5 p.m. - 8 p.m.
SCAA Hosting ‘Fantastical Flora’ Art Reception
Love is in the air at The MAIN, where “The Diaries of Adam and Eve” will take the stage in February!
‘Diaries of Adam and Eve’ Coming to The MAIN
On Saturday, Jan. 22, Santa Clarita Transit partnered with Guide Dogs of America to provide training to service dogs in Central Park.
Santa Clarita Transit Lends Helping Hand to Guide Dogs
Henry Mayo Newhall Hospital reported two additional deaths from COVID-19 Thursday, bringing the total number to 208 since the onset of the pandemic, confirmed spokesman Patrick Moody.
Thursday COVID Roundup: Henry Mayo Reports Two Additional Deaths
The Santa Clarita City Council will hold its Budget Committee meeting Monday, Jan. 31, at 2:00 p.m.
Jan. 31: Santa Clarita Budget Committee Meeting
During the month of February, the city of Santa Clarita is teaming up with community partners to help show appreciation for our hospital staff who have been on the frontline of this pandemic for nearly two full years.
City, Local Organizations Partner to Thank Henry Mayo Staff
The Los Angeles County Department of Public Health cautions residents who are planning to visit the following Los Angeles County beaches to avoid swimming, surfing, and playing in ocean waters
Water Use Warning Issued for L.A. County Beaches
1970 - Gov. Ronald Reagan appoints Adrian Adams as Newhall's first "second" judge [story]
Adrian Adams
Caltrans announced Tuesday it is approving the use of low-carbon cement to help reduce the carbon footprint of California’s transportation system.
CalTrans Approves Use Of Low-Carbon Cement For Future Projects
The Tejon Ranch Conservancy is honoring one college intern's passion for wildlife conservation and highlighting her unique story.
Tejon Ranch Conservancy Recognizes College Intern’s Passion for Wildlife Conservation
The Los Angeles County Department of Public Health confirmed 91 additional deaths and 20,866 new cases of COVID-19 countywide, with 66,432 total cases in the Santa Clarita Valley.
Wednesday COVID-Roundup: County Reports Youngest Death Since Pandemic Began
State Superintendent of Public Instruction Tony Thurmond announced "A Trusted Space: Redirecting Grief to Growth", a film-based program to help address increasing mental health challenges faced by students during the COVID-19 pandemic.
State Superintendent Launches Statewide Mental Health Program
Symptoms of depression and anxiety have doubled during the pandemic for youth across the country, according to the United States Surgeon General.
Feb 10: County Hosts Youth Mental Health Seminar
Los Angeles County Supervisors Kathryn Barger and Janice Hahn called Tuesday for a thorough assessment of the Department of Children and Family Services that will place a spotlight on how well the organization is guided by evidence-based decisions and data to deliver outcomes for its clients. 
Board of Supervisors Approve Assessment of County Children and Family Services
1990 - "Duplicates" premieres at L.A. Phil; concerto by CalArts Music School dean Mel Powell wins Pulitzer Prize [story]
Mel Powell
SCVNews.com
%d bloggers like this: