A drug company abandoned a treatment for  ‘bubble boy disease.’ After a 5-year fight, this little California girl is about to get it

• April 27, 2023

Later this spring, a little girl in California who essentially has no immune system will receive a lifesaving treatment for “bubble boy disease” thanks to the persistence of a dogged group of parents, a pediatrician, a veteran newsman and a few episodes of “Grey’s Anatomy.”

Five-year-old Seersha Sulack has the same rare disease portrayed in the 1976 John Travolta movie, “The Boy in the Plastic Bubble.” A germ — even a common cold — could kill her, and so she stays away from anyone outside her immediate family.

The treatment she’s been waiting for had stunning, near-perfect results in a clinical trial, but it’s been sitting on the shelf for years in the US because the pharmaceutical company that once owned the license abandoned it when it decided not to not to pursue approval from the US Food and Drug Administration.

“It’s a pretty tough situation,” said Dr. P.J. Brooks, acting director of the Division of Rare Diseases Research Innovation at the National Institute of Health’s National Center for Advancing Translational Sciences. “You have an effective therapy like (this one) and people can’t get access to it.”

Seersha is expected to get the treatment next month. She’ll become only the second child in the US in the past five years to receive it; the first child received it earlier this month.

The treatment is for a particular type of severe combined immunodeficiency called ADA-SCID that’s extremely rare — in the US, eight babies a year are born with it. Currently, 26 children in the US and Canada are on the waiting list to get the therapy, according to Dr. Donald Kohn, a UCLA scientist who has been working on the treatment for nearly 40 years.

The treatment is a type of gene therapy: Doctors will give Seersha a normal copy of the defective gene that disabled Seersha’s immune system.

Gene therapies hold great hope for all sorts of diseases, but they’re very expensive to develop, and pharmaceutical companies can’t be sure that they’ll make a profit because health insurance companies haven’t always agreed to pay the multi-million dollar price tags.

“It has not escaped our attention at FDA that there have been some clouds on the horizon in gene therapy,” Dr. Peter Marks, head of the US Food and Drug Administration’s Center for Biologics Evaluation and Research, said at a biotech conference in California in October. “We really want to try to see what we can do to move things forward.”

The gene therapy Seersha’s been waiting for was once called OTL-101, for Orchard Therapeutics Limited. Orchard launched in 2016 with OTL-101 as its “lead candidate,” but four years later, the company announced it would “reduce investment” in the therapy and prioritize treatments for more common conditions.

“A lot of us were upset and angry,” said Seersha’s mother, Shayla Sulack, noting that OTL-101 was developed with millions of dollars in state and federal government aid.

“We were always, ‘it’s going to happen, it’s going to happen,’ ” she added. Then, after Orchard decided not to pursue the therapy, “a bunch of us SCID moms were like, ‘Excuse me?’ “

In a statement to CNN, an Orchard spokesperson wrote that “after encountering technical challenges related to the commercial-grade manufacture of this particular therapy, we made the very difficult decision to limit additional investment in [the SCID gene therapy].” The spokesperson spoke on the condition of anonymity.

Seersha could receive stem cells from a family member — her parents or siblings — but none were a particularly good match.(Courtesy Shayla Sulack)

A mother’s ‘oh, crap’ moment

Shayla and her husband, Stephen Sulack IV, were high school sweethearts at Tehachapi High School, about 100 miles north of Los Angeles. In 2010, when she was 18 and he was 19, they married at the Little White Wedding Chapel in Las Vegas.

Stephen was in the Army, and over the next few years, the young couple moved to various military bases. Their daughter Skylar was born in 2012 and son Stephen V in 2014.

In 2017, the family moved to Hawaii for Stephen’s new post as a Black Hawk helicopter pilot at Schofield Barracks in Oahu. Two weeks later, Seersha was born at Tripler Army Medical Center in Honolulu.

Weighing 6 pounds and 10 ounces, Seersha appeared perfectly healthy, and her parents took her on family outings, going to Dole Plantation and Waikiki Beach when she was five days old.

Strolling around the shops near the beach that day, the family went into a Tesla dealership just for fun. While sitting in a showroom car, Shayla got a phone call from a number she didn’t recognize.

It was a geneticist at Tripler. He told Shayla that a routine blood test, a prick on a newborn’s heel done in nearly every state, showed Seersha’s level of T cells — a type of white blood cell crucial to fighting off infections — was just five. Normal T cell levels for newborns are around 3,000.

This meant any infection, no matter how small, could kill Seersha. The geneticist said to bring her back to the hospital at Tripler immediately.

The geneticist said to bring her back to the hospital at Tripler immediately.

Shayla says her first reaction was: “Oh, crap.”

Not only had they been going everywhere with their new baby, but Seersha’s big brother and sister had been affectionately pawing all over her.

Shayla and Stephen left the Tesla dealership and made the 20-minute drive to the hospital while Shayla’s parents took the older two children home in their car.

At Tripler, doctors explained more about SCID, and a psychologist was on hand to help the Sulacks deal with the shocking news.

Only about one baby a year is born with the SCID in Hawaii, according to Sylvia Mann, genetics coordinator at the state’s department of health.

The next day, Shayla and Seersha were on a military medical transport flight to Los Angeles. Seersha was in an incubator in the front of the plane, and the other patients were kept in the back to decrease the chances they could get her sick.

An ambulance drove Shayla and Seersha to UCLA Mattel Children’s Hospital, one of 47 medical centers in the US and Canada that specialize in SCID as members of the Primary Immune Deficiency Treatment Consortium funded by the National Institutes of Health.

Once there, doctors laid out the options for saving Seersha’s life.

Five-year-old Seersha Sulack has the same rare disease portrayed in the 1976 John Travolta movie, “The Boy in the Plastic Bubble.”(Linda Wang/UCLA Broad Stem Cell Research Center)

Options for Seersha

It turned out none of them were very good.

ADA-SCID is treated with regular injections to replace a missing enzyme that helps with immune function. They help a great deal, but they don’t give the child a full immune system, and their effectiveness can wane over time.

The UCLA doctors laid out two longer-term options. Seersha could receive a stem cell transplant, which is lifesaving and the standard treatment for SCID. Doctors would test her mother, father, brother, and sister and determine the best genetic match, and then would extract cells that specialize in forming blood cells and give them to Seersha.

Testing showed that any of her family members could donate to her, but none of them was a particularly good match. This was bad news for two reasons: One, the transplant likely wouldn’t be as effective. Two, Seersha would be more likely to suffer complications.

Those complications could be very serious. In preparation for the transplant, Seersha would need high doses of chemotherapy, which would leave her vulnerable to infection in the short term and at increased risk for cancer and infertility in the long-term. After the transplant, the donor’s cells might attack Seersha’s organs and tissues, which is treatable but could make her very sick.

The doctors laid out another option: gene therapy. They would take Seersha’s blood cells, treat them to give her a normal copy of her defective gene, and then give the cells back to her. Essentially, Seersha would be giving herself a transplant, which has two advantages: She could get much lower doses of chemotherapy, and her body wouldn’t perceive the new cells as a foreign attack.

This sounded familiar to Shayla. She realized she’d seen episodes of “Grey’s Anatomy” where a character with SCID received gene therapy.

She brought it up to Kohn, the UCLA gene therapy researcher. He told her that not only had he seen the episodes, but he’d given “Grey’s Anatomy” staffers a tour of his lab and answered their questions while they were preparing the story arc, which aired in 2014. He still had the “Grey’s Anatomy” mug and note pads they gave him as a thank you.

Kohn explained to Shayla that doctors in the US and UK had done a clinical trial with dozens of children with this gene therapy and the results had been very good, but Seersha couldn’t participate since the trial had enrolled its last patient. The treatment wasn’t on the market — Orchard had yet to apply for FDA approval — so she couldn’t get it that way, either.

The only thing they could do was wait for FDA approval, and there was a bit of good news there: Just a few months before Seersha was born, the agency granted Orchard a rare pediatric disease designation, which would give the treatment priority review by the FDA. Kohn says he believed the therapy would be available to Seersha and other children in two to three years, so in 2019 or 2020.

The Sulacks weighed their options: Have a transplant with a match that was less than ideal — far less — or wait for gene therapy to become available.

They chose gene therapy.

“I don’t like the word ‘normal’, but I’m ready to have something normal for her,” Shayla Sulack said about her daughter, Seersha.(Courtesy Shayla Sulack)

Anxious families await word on treatment

After spending nearly eight weeks at Mattel in the fall of 2017, Seersha was discharged from the hospital. Stephen put in for a transfer from Hawaii to Fort Irwin in San Bernardino, California, so they could live closer to UCLA and to family.

For her first year of life, Seersha hardly ever left her bedroom, which her parents filled with toys to entertain her. She had contact with only her parents and Shayla’s parents — not even her siblings — and the adults changed into clean clothes before coming near her.

After that year, her weekly enzyme infections started to kick in, and Seersha could go into other rooms of the house and be near her immediate family. But still, her immune system wasn’t very strong: Normal T cell levels for a child her age are about 2,390 and Seersha never got above 250.

Seersha started to leave the house, but avoided crowds and contact with people. She watches her brother and sister’s baseball and softball games from a distance, sitting on the tailgate of the family’s truck. If her parents and siblings ever start to feel sick, even just a sore throat or a sneeze, they have to keep their distance.

In January 2020, a few months after Seersha’s second birthday, Orchard announced encouraging news: The company said in the first half of the year, it planned to to initiate the FDA approval process for the gene therapy and it anticipated it would take a year to complete the application.

The Sulacks were shocked when four months later, the company issued a news release saying it had a net loss of $50.6 million in the previous quarter and would “reduce investment” in its SCID gene therapy and prioritize research for other diseases.

The news release didn’t say anything else about the SCID gene therapy. At this point, there were 14 families in the US and Canada like the Sulacks waiting to get it. They were filled with anxiety as they waited to see what would happen.

Was the company still planning to apply to the FDA to get approval? If so, would the timetable be slower than expected?

Or was the company abandoning its plans for SCID gene therapy altogether?

‘Superhero meets Florence Nightingale’

Whenever Dr. Fyodor Urnov, a scientist at the Innovative Genomics Institute at the University of California, Berkeley, gives a presentation about ADA-SCID, he starts with a picture of Kohn next to a boy he treated in the clinical trial. Kohn has been working on this therapy for decades, Urnov explains to his audience, persevering through countless hurdles.

“His juxtaposition of accomplishment and goodness is unbelievably rare,” said Urnov, a professor of molecular and cell biology at Berkeley, who has worked with Kohn for 20 years. “He’s some sort of superhero meets Florence Nightingale.”

Now 68, Kohn first started researching gene therapy for ADA-SCID when he was 31 and a fellow at the National Institutes of Health, working in the lab of Dr. Michael Blaese, a pioneer of gene therapy.

It was an exciting new field. In 1986, Kohn, Blaese and their colleagues published a study on the ADA-SCID treatment in the Proceedings of the National Academy of Sciences. More than 25 years later, in 2012, Kohn and his team started the clinical trial for their ADA-SCID therapy with children at UCLA, the NIH, and the Great Ormond Street Hospital in London.

By 2016, when Orchard launched, the clinical trial results looked promising, with 100% survival in 32 patients, according to a company news release at the time.

Four years later, when Orchard announced it would reduce investment in the gene therapy, Shayla Sulack called Kohn asking if Seersha would ever get the treatment.

“He said, ‘this is my life’s work,’ basically, and there’s no way I’m not going to get this back,” Shayla remembers. “He said, ‘this is mine, this is my thing and I’m not going to let it die.’ “

Shayla said she had “full faith” that Kohn would keep to his word.

In the US, about eight babies a year are born with ADA-SCID. Seersha Sulack’s parents learned their daughter had it when she was five days old.(Courtesy Shayla Sulack)

‘A desperate call to save young lives’

Once Orchard abandoned the treatment, Kohn’s mission became to get the license for the therapy back so he could start using it to treat Seersha and the other children.

It wasn’t an ideal solution. The typical route for biotech development is to start in an academic lab, sell the discovery to a pharmaceutical company, get FDA approval and then get it on the market. For Orchard to return it back to the academic researchers was a backward move.

“I didn’t expect it,” Kohn told CNN. “It’s like having a college kid move back home.”

Kohn says in 2020, UCLA and University College London initiated discussions with Orchard. In the meantime, parents of children with SCID took matters into their own hands.

Parents in a support group called the SCID Angels for Life Foundation, asked to meet with Orchard President Dr. Bobby Gaspar. While the company did not make Gaspar available, the parents did have a Zoom call with other staffers, according to Heather Smith, president and founder of the parents’ organization.

The parents requested that Orchard abide by the academic researchers’ request and return the license to the universities.

But the company kept the license, and the treatment continued to sit on the shelf. In February, 2021, the parents of more than 20 children who were waiting for the gene therapy treatment, including the Sulacks, wrote a letter to Gaspar.

The families implored Gaspar “to treat this as a desperate call for help to save young lives” and urged him to “please consider addressing this issue.”

“(If) Orchard strikes out boldly now to lift these babies/children out of mortal danger and wipe the tears off the faces of their distressed parents, you may rest assured that the financial bits will fall in the right order, assuring significant gains for you as well,” the parents wrote. “Thus, putting patients first and choosing a positive course of action will only lead to a happy outcome all around. Not to mention the lives you will be changing now and forevermore.”

Each family included pictures and information about their child.

Smith said the parents did not hear from Gaspar for months.

The parents also spoke with David Jensen, a retired newsman and editor of the California Stem Cell Report. On May 11, 2021, Jensen wrote a story about the families’ plight, followed by more than a dozen other posts about Orchard. Two weeks later, the Los Angeles Times picked up on his reporting.

“He really lit a fire and kept the story going,” Smith said. “He kept it on the radar, so Orchard knew we were not just going to away quietly.”

When she was 6 days old, Seersha was on a military medical transport flight to Los Angeles.(Courtesy Shayla Sulack)

‘An enormous stain’

On May 11, 2021, the same day as Jensen’s first story, the New England Journal of Medicine published results of Orchard’s clinical trial, which showed the gene therapy was successful for 48 out of the 50 patients treated and with far fewer side effects than conventional transplants. The two patients for whom it didn’t work went on to have successful conventional transplants from donors.

Those 48 children are now living normal lives, going to school and playing with friends, and they no longer need to take enzyme shots or other treatments to boost and protect their immune systems, Kohn said.

“The other patients we treated in the past — we barely hear from them anymore, they’re doing so well,” he said, adding that doctors continue to monitor the children.

Urnov, the director of technology and translation at Berkeley’s Innovative Genomics Institute, noted that the gene therapy “cured 48” of the 50 patients in the study.

“When you have an efficacy of five out of 50, it’s a celebration. Ten out of 50, literally, you feel like you’ve accomplished the biggest thing you’ve ever done in your life.”

Still, the treatment sat on the shelf.

“To have something this astonishingly curative languish because the marketplace isn’t configured to deliver curative therapies for rare diseases — it’s just an enormous stain,” Urnov said.

Two weeks after the study published, Gaspar, the Orchard president, wrote an email to Smith and two other mothers of children with SCID.

“Earlier this morning we informed UCLA and [University College London] of our intent to return the OTL-101 license to them,” Gaspar wrote. “This was not an easy decision to make, especially given my long history with the OTL-101 program and relationship with the community, but I recognize and respect your strong preference to transition OTL-101 back to our academic collaborators at this time.”

Gaspar attached a letter he’d written that day to members of the ADA-SCID community.

The letter noted that the company would continue to give UCLA and University College London “financial and material resources” including material to help make the treatment. When asked by CNN, the company spokesman declined to say how much money the company was giving the universities.

Orchard also noted difficulties they had making the therapy.

“Although the clinical data for investigational OTL-101 are very encouraging, we have encountered technical issues specific to the commercial-grade manufacturing processes for this particular therapy that must be addressed before we, or any other entity, could progress the program toward a regulatory submission,” Gaspar wrote. “Without the ability to reliably manufacture OTL- 101 at a commercial standard there is no way to receive FDA approval for the gene therapy.”

Some parents doubted whether manufacturing issues were the real reason Orchard had abandoned SCID gene therapy. They say the company’s true motivation was profit — that Orchard saw its revenues decreasing and chose not to pursue the ADA-SCID treatment so they could focus on therapies for more common diseases with likely more lucrative markets.

The parents noted that abandoning the ADA-SCID treatment saved Orchard money. Direct expenses associated with the ADA-SCID gene therapy treatment declined by $3.8 million, according to an Orchard filing with the US Securities and Exchange Commission for the third quarter of 2021. The company did not specify the time period for this decline.

“At the end, what they’re saying is, ‘we’re not going to make money off this, so goodbye.’ And we never got an apology,” said Andrea Fernandez, whose 3-year-old son, Jakob Guziak, is on the waiting list to receive the ADA-SCID gene therapy. “It hurts.”

The Orchard spokesperson declined to comment when asked whether the decision to abandon the therapy was impacted by the shift to pursue therapies for more common diseases.

In an email to CNN, the Orchard spokesperson said that “we worked to find a viable path forward for this program outside of Orchard but were unable to identify a new partner.” The spokesperson also noted that the decision to limit additional investment in OTL-101 was “due, in part, to the availability of standard-of-care treatments.”

Once the academic medical centers got the license to the gene therapy back in 2021, they had to get funding for a new trial and start the process of making the treatment again.

The universities received the money from California Institute for Regenerative Medicine, a state agency, and the first child in the US received the treatment earlier this month. Seersha had her stem cells extracted a few weeks ago and is expected to get the treatment in May.

It couldn’t come soon enough, her mother says. The power of her weekly enzyme injections has waned over the past few years, and her T cell levels have dropped dramatically.

There are more than two dozen children waiting to get the gene therapy treatment in the US and Canada, but there’s only enough money to treat a few more children, somewhere between one and four, and UCLA is looking for more funding.

Urnov, the scientist at Berkeley, said he hopes they figure it out soon.

“We’re talking about giving patients access to treatments that show the best efficacy profile in the entire 30-year history of our field,” he said.

Seersha’s family spent time at Dole Plantation just before they learned she had SCID.(Courtesy Shayla Sulack)

Seersha packs her unicorn suitcase

Testifying to a Senate subcommittee last week, FDA Commissioner Dr. Robert Califf acknowledged that gene therapy “is an area we’ve got to move along more quickly.”

He told the Senate appropriations subcommittee that gene therapy will be “a big focus of attention,” with the agency hiring 150 to 200 people to work on it.

The agency is holding two public meetings this week on gene therapy. In the announcement for one of them, the agency notes that “the rapid pace of innovation for cell and gene therapy products holds promise for transforming medicine.”

Later this year, the FDA will launch a pilot project to “further accelerate the pace of development of therapeutics for very small populations with very high medical need,” which will “build off of the agency’s experience with accelerated vaccine development as part of Operation Warp Speed during the Covid-19 pandemic,” FDA spokesperson Carly Kempler wrote to CNN.

At the California meeting last fall, Marks, the FDA official, said high-income countries could have a “convergence of regulatory approach” for gene therapies for rare diseases. The theory is that if several countries have similar regulations, it would create a larger and more accessible market for pharmaceutical companies.

Dana Goldman, dean and co-director of the Schaeffer Center for Health Policy & Economics at the University of Southern California, has another idea to make gene therapy more financially viable.

Insurance companies have sometimes balked at paying for gene therapy, which is typically given in one treatment. Goldman proposes that insurers be allowed to pay for it over time rather than in one lump sum.

“We’ve solved the high cost of buying a home with home mortgages, not by policies that lower home prices. We should do something similar for drugs, particularly those that cure diseases, which are likely to have up-front costs in the hundreds or thousands, if not millions, of dollars,” Goldman and his co-author Anupam Jena wrote in Stat in 2017.

In an email to CNN, David Allen, a spokesperson for America’s Health Insurance Plans, an association of health coverage providers, said this and other approaches “are being explored,” but that it “cannot be carte blanche for drug manufacturers to charge nearly-unlimited prices for their drugs, particularly for emerging therapies with limited evidence of long-term safety and efficacy.” When asked if insurance companies have sometimes refused to pay for gene therapy, Allen wrote that insurance providers “have chief medical officers who lead clinical teams. These teams have expertise in reviewing the best available evidence pertaining to new and emerging treatments and making coverage decisions.”

“As our society faces emerging treatments that are very high cost and potentially curative, stakeholders will need to explore innovative approaches to financing the treatments that are proven effective,” he added.

While drug companies, insurance plans and regulators figure out the best way to get gene therapy to patients, Shayla and Stephen Sulack are just happy that finally, their daughter will be getting her treatment soon.

Shayla says Seersha understands that the treatment can help her, and last Christmas, she asked Santa for a unicorn suitcase to pack up her clothes and toys for her stay at the hospital.

“She’s like, ‘I’m ready. Let’s do this. Let’s go,’ ” Shayla said. “She’s like, ‘I want to play softball. I want to play baseball. I want to do jujitsu’ [because now] she can’t do any of those things.”

If all goes as expected, once Seersha recovers from the gene therapy, she’ll be able to stop taking the enzyme shots and getting infusions of immunoglobulin — between the two, around seven needles every month.

As for Shayla, she says in some ways she’s “terrified” for the upcoming treatment, since her daughter will have to get chemotherapy and spend weeks in the hospital, but she’s also excited.

“She’s missed so many things — she wants to go to a Dodgers game, and Daddy has taken her brother and sister and she sat on the couch and watched it on TV and tried to see if she could see them,” Shayla said. “I don’t like the word ‘normal’, but I’m ready to have something normal for her.”

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​ Orange County Register 

CSUF faculty member honored with prestigious leadership award

• April 27, 2023

By Nicole Gregory, contributing writer

Ding-Jo Currie, distinguished faculty member in the Higher Educational Leadership Program at Cal State Fullerton, was honored with the Leadership Award and inducted into the Leadership Hall of Fame by the American Association of Community Colleges earlier this month, in recognition of her career in developing the quality of leadership in students.

The award is given to retired community college presidents or chancellors who have made outstanding contributions to the sector, said Martha Parham, senior vice president of the Washington D.C.-based AACC.

“I’m very humbled by it,” Currie said of the award. But she is very much a worthy recipient according to people who know her.

Currie’s career in higher education spans more than 40 years. When she retired as the first female chancellor of Coast Colleges in 2011, Currie came to Cal State Fullerton, where she founded the Leadership Institute for Tomorrow.

“Dr. Currie is a major advocate for the underrepresented and least advantaged in our communities,” said Chi-Chung Keung, director of news media services and senior communications counsel at Cal State Fullerton. “She works tirelessly to educate local and global leaders to understand the needs and challenges of those less fortunate.”

“She is incredibly friendly and down-to-earth and has an amazing way of seeing the potential not just in students, but also just in people in general,” Parham said. “So, she’s able to inspire people to greater heights, to better things for their career.”

Born and raised in a rural area of Taiwan in a home surrounded by rice paddies, Currie remembered her mother taking her to nursery school over a long, swaying footbridge, high above a rushing river, when she was just 4 years old. After accompanying her just twice, Currie’s mother told her daughter to go by herself, an experience that taught the girl about fear and courage.

Currie came to the U.S. with her sister as a teenager and went on to receive her bachelor’s degree from Manchester University in North Manchester, Ind., a master’s degree from Wright State University in Dayton, Ohio, and a doctorate in intercultural and international education from the University of Southern California.

Currie was inducted into the Leadership Hall of Fame at the American Association of Community Colleges Conference in Denver. (Courtesy of CSUF News Media Services)

Leadership means more than managing a big budget or supervising others, Currie said. “We feel that developing good leaders is about developing excellent quality characteristics. To be a leader, first is character development. How do you develop your own integrity capital? How do you develop compassion? How do you develop all those characteristics that are important?

“I am also proud to have served on the board for Air University of the Air Force, for which I received the Commander’s Award, the highest award a civilian can receive. It was my privilege and honor to have served the United States Air Force as a civilian,” she said.

Even with her many achievements, Currie continually works to improve herself, with questions such as, “How did I do today? How could I do better tomorrow?” she said. “I think that’s a healthy process. I always say, ‘Can I do this?’ Raising that question to yourself, it’s a good process of self-reflection.”

She encourages her students to do the same, “not to be stuck in the past, but to use the past to propel you moving forward,” she said.

“Then they begin to have that process of this making a new version of themselves by chiseling away the rough edges and cutting the diamond,” she said. “Then they have that brilliance. To me, outside of the medical field, education is the most rewarding. In medicine, people save lives. We do, too. People ask me, ‘What kind of work do you do?’ I say, ‘I’m in the life transformation business.’ ”

Keung says Currie is effective because she identifies with students. “Her story as an international student, as a woman and minority college administrator, and as someone who learned English as a second language, helps her identify with many of the students that come to her for advice and encouragement,” he said.

Developing leaders for community colleges is critical to Currie. “In the leadership institute that I direct, it’s about rising the tide for community college leadership,” she said. “This is the part that really brings me joy — cultivating future leaders.”

Over the years, Currie has often been approached by former students who say she inspired them to become leaders. “They say, ‘Look at me — I’m the president. I wanted to tell you.’ That’s really what I’m proud of.”

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​ Orange County Register 

Anaheim briefs: City hosts health fair, fun for active older adults

• April 27, 2023

The city’s Active Older Adult Program will be holding a spring boutique and health fair in partnership with the Anaheim Senior Citizen’s Club on April 29 at the Downtown Anaheim Community Center, 250 E. Center St.

The event will have unique gift and craft items, entertainment, demonstrations, health screenings and resource services available.

The health event will be from 10 a.m. to 1 p.m. and the boutique will be open from 10 a.m. to 2 p.m.  There will be a light lunch served from noon to 1  p.m. for event participants.  There is no cost for the event.

For additional information call 714-765-4511.

Showing veterans appreciation

A Vietnam veterans appreciation dinner is planned for April 30 at the Anaheim Veterans of Foreign Wars Post 3173.

The 4 to 8:30 p.m. event is a collaboration between the son of a Vietnam veteran, David Keil, and the VFW Post.

Join brothers and sisters in arms and refugees for an evening of remembrance and comradery, the invitation says.  Guest speakers will include Brittanie Ngo, USAF, and Col. Quy Nguyen, USAF retired.

Tickets are $25 for general admission and are free for U.S. Vietnam veterans and Army of the Republic of Vietnam veterans, plus one guest. For more information contact [email protected] or call 949-954-0605.

Check out rocks and minerals

The Searchers Gem & Mineral Society is holding its annual rock and mineral show in Anaheim on April 29.

The show includes door prizes, lapidary demonstrations, exhibits, gold panning, children’s treasure hunt and ring-making, gem and mineral vendors and a large silent auction of rocks, minerals and jewelry.

There will be free admission and parking at the Brookhurst Community Center, 2271 W. Crescent Ave.

Celebrate children

Don’t miss Day of the Child celebrations at Anaheim libraries.

Two celebrations are planned for April 27, both at 4 p.m. One will be at the Central Library and another at the Ponderosa Joint-Use Branch.

For more information call the Central Library at 714-765-1880.

Eat, drink and support the Rotary

The Rotary Club of Anaheim will be presenting its Grapes & Grains fundraiser on May 17.

The evening will feature a reception and silent auction at the City National Grove of Anaheim. Bruce and Johrita Solari will be honored for all of their work in the community and with the Rotary.

The event begins at 4 p.m. and is $39 per person in advance, $45 at the door, which includes all food, wine and beer tastings. Tickets are available at eventbrite.com. All proceeds benefit local youth and seniors served by the Rotary Club of Anaheim.

A magical night with Anaheim First Presbyterian

Anaheim First Presbyterian Church is offering an “evening of music, magic and mystery.

John Guastaferro, an accomplished Spanish, Flamenco and jazz guitarist, as well as a magician and frequent headliner at the Magic Castle, will share live music, moments of magic and stories that weave them together.

The event is 6 p.m. on May 11 with a $20 donation to the church at the door – refreshments are included.  There is parking behind the church at 310 W. Broadway at Clementine Street. RSVP to Linda Newby at [email protected]

Parade through Old Towne Orange

The Orange May Parade is set to step off at 10 a.m. on May 6.

The Orange Chamber of Commerce announced the parade will be hosted again through Old Towne Orange. The theme is a throwback to the 1970s: “Peace, Love and Orange!”

The chamber has hosted the event since 1933. Local schools, nonprofits, community groups and more will be there.  The Grand Marshal is Vikki Vargas, former KNBC reporter.

Teens can get volunteer hours

The city of Anaheim is again offering its Summer VolunTEEN program.

There are volunteer opportunities for teens ages 13 to 17 throughout the city this summer. Applications are due on May 12.

Applications can be found at Anaheim.net/volunteens. For more information call the volunteer coordinator at 714-765-4994 or email [email protected].

Andrea Manes shares with her neighbors events and news about the Anaheim community. If you have an event to share, contact her at [email protected] or 714-815-3885.

​ Orange County Register 

Turf war between federal Equal Employment Opportunity Commission and California’s Civil Rights Department

• April 27, 2023

California is at war with the federal Equal Employment Opportunity Commission (EEOC). This fight has nothing to do with a misbehaving big business or a tech titan. Rather, it’s a bureaucratic turf war caused by the state’s Civil Rights Department (CRD).  

The CRD, known until about nine months ago as the Department of Fair Employment and Housing, is straightforwardly tasked with enforcing the state’s civil rights laws. Despite the benevolent name and mission, it’s better known as a rogue agency, more focused on media attention and agitation against big companies, including Cisco, Disney, Riot Games, and Tesla. 

Case in point: The present turf war with the feds, triggered by CRD’s decision to step between Activision Blizzard, a video game company, and the EEOC. Several years ago, the company had reached an agreement with the EEOC to pay $18 million to settle claims that its employees had been subjected to sexual harassment and other workplace violations of federal law. 

But before the terms of a September 2021 consent decree could be carried out, the California CRD hired two outside law firms and stepped into the legal fray, claiming it was better positioned than the EEOC to pursue relief for California victims. 

Movies and television typically show the FBI or some other federal agency swooping in and stealing investigations from the local authorities. Reality, at least in this instance, is somewhat different. 

Stung by the CRD’s aggressive tactics, Activision fought back, filing a lawsuit in December against the department to stop its “unlawful efforts to hide its media assault on the Company and the Company’s court-approved settlement with the” EEOC. The lawsuit also alleges the CRD “​​deliberately unleashed a hurricane of hostile media coverage against [Activision] based on malicious and knowingly false assertions” and “worked with activists who contributed to the CRD’s media war.”

The Activision suit says this is part of a pattern in which the CRD follows a “deliberate strategy” when it brings “cases against companies across California.” It further alleges that the CRD and its employees, including Director Kevin Kish and its then-Chief Counsel Janette Wipper, who was subsequently fired, engaged in a systemic campaign to “overwhelm” the company through “off-the-record media briefing” and leaks. 

All of it was in violation of the CRD’s own stated “policy not to speak to the media about ongoing matters.”

An amicus brief filed in federal court before the state lawsuit was brought complains that the CRD’s effort to crash Activision’s federal settlements directly interferes “with the policies promoted by Title VII” of the Civil Rights Act – which makes it unlawful for an employer to discriminate against someone because of their race, color, religion, sex or national origin – and that “it is not the desire to prevent discrimination that animates CRD’s appeal.” 

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The CRD even “admits that it also has its own interest at heart,” the brief contends—and the interests of its legal partners. Unlike the EEOC, which used staff attorneys to pursue the case, “CRD has retained private law firms that regularly pursue class actions on a contingency basis to obtain large fee awards.”

The attorneys at those private firms are among what journalist Matt Taibbi has called the “Lawyers Who Ate California.” In a withering multi-part series that touches on the CRD dispute, Taibbi chronicled one “​​of the bitterest bureaucratic turf wars this country has seen.” Taibbi marvels that, as recently as 2017, the CRD “was an agency with traditionally more modest aims, a bane of slumlords and strip club owners that took thousands of calls a year and litigated only in the rarest of cases.” But it soon became a reckless enterprise.

The Civil Rights Department is not the only governmental authority in California that sees businesses as deep wells of dollars to be taxed and fined or regulated into submission. Companies have noticed this and have been fleeing for years to states where the business environment is less hostile. The flight will continue until the CRD and other agents of government “service” are pulled back by policymakers who have noticed the California model is failing.

Kerry Jackson is a freelance writer living in California. He was an editorial writer at Investor’s Business Daily for 18 years.

​ Orange County Register 

Dwayne Wade, who has trans daughter, says he left Florida because family ‘would not be accepted’

• April 27, 2023

Former NBA star Dwayne Wade has discussed his family’s decision to leave the state of Florida, which he hinted at being due to the current political climate around transgender policies.

Wade’s conversation will air Thursday on “Headliners with Rachel Nichols,” Showtime’s new talk show that centers around the reporter’s meetings with top NBA figures.

Wade was asked about Florida politicians who stand against LGBTQ policies, and how the situation affects families like his own. In 2020, Wade’s 15-year-old daughter Zaya came out as transgender.

Here’s what Dwyane Wade said on Headliners when I asked him about anti-LGBTQ laws in Florida: “That’s another reason why I don’t live in that state. A lot of people don’t know that…my family would not be accepted or feel comfortable there.” pic.twitter.com/1ya0AevA1C

— Rachel Nichols (@Rachel__Nichols) April 26, 2023

“That’s another reason why I don’t live in that state,” Wade told Nichols in a clip shared with People Magazine. “A lot of people don’t know that. I have to make decisions for my family, not just personal, individual decisions.”

The former Miami Heat player, 41, said that he does appreciate the tax incentives in the state, as well as the fact that Miami-Dade County was temporarily renamed “Miami-Wade County” in his honor.

But the positives don’t outweigh the negatives for Wade, who said, “My family would not be accepted or feel comfortable there. And so that’s one of the reasons why I don’t live there.”

Wade also discussed how he models his fathering style after his own dad, whom he described accepting of all his sons in addition to others in their community when he was growing up.

“And so I don’t know any difference,” Wade added. “And so yes, I had to educate myself and yes, I had to get a better understanding. And yes, I had to lose some friends along the process, but I never wavered on loving my kids and trying to find space to get the chance to understand them.”

Wade, who’s married to actress Gabrielle Union, is also father to a 4-year old daughter, Kaavia, 8-year-old son, Xavier Zechariah and 20-year-old son, Zaire.

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​ Orange County Register 

Crystal Cove’s latest restoration focuses on past, but also a future facing climate change

• April 27, 2023

Crystal Cove’s historic cottages on the sand tell a story about the coastline’s past – a California architectural style unique to decades ago, tales of a close-knit community sprouted from a post-war era and a history so important that tens of millions of dollars have been spent to preserve the small slice of coastal heaven.

The nonprofit Crystal Cove Conservancy is making headway on a $55 million project to restore the last cottages needing preservation along the north end of the 2.3-acre Crystal Cove Historic District, with five new units expected to be open in coming weeks.

Along with the painstaking detail going into preserving the past, much thought has also been given to the future of the cottages – from building to ensure they can withstand future climate challenges to educating a new generation of engineers to document and plan for rising seas.

“Crystal Cove is a unique State Park in California because it is a place where we can contemplate the challenges of balancing environmental needs against cultural needs, against today’s recreational needs,” said Brett Sanders, a UC Irvine professor of civil and environmental engineering. “And realize that it’s not going to be easy.”

For decades, the beachfront community known as “coveites” enjoyed a laid-back lifestyle living in a cobbled together collection of cottages, many built from wood that washed ashore, having Saturday night martini parties, beach bonfires and eating fresh fish and abalone plucked straight from the sea.

Today, the first of the restored cottages are used for a mix of educational programs and overnight stays – they are the most sought after in the State Parks system. And 17 more are now undergoing a massive makeover, with details down to the doorknobs reflecting the time period they were built between the ’30s and ’50s.

Planning for the future

As work is underway to preserve the area’s past, much has also been done to plan for the area’s future.

Kate Wheeler, president and CEO of the Crystal Cove Conservancy, talked about the long journey to restore the North Beach cottages, saying the California Coastal Commission “put us through the paces,” partly to ensure the area could withstand future sea-level rise.

The 650-foot-long boardwalk that fronts the first row of cottages was the biggest hurdle, needing to be built in a way so it didn’t act like a seawall, which could contribute to coastal erosion.

“We had to go back and redo the engineering plans,” Wheeler said. “Through that process, that’s where this coastal engineering project with UCI was born and we started working with the school of engineering.”

The entire project, the Coastal Commission said, had to withstand the levels of sea level rise expected by 2050.

“For $55 million,” Wheeler said, “I really want these to be standing after 2050.”

Instead of a boardwalk that would block the ocean, the wooden walkway was lifted with several caissons drilled down into the bedrock so water could naturally slope under it.

By contrast, the cottage on the opposite side of the beach, which was used in the ’80s Bette Midler movie “Beaches,” has a seawall in front that has impacted the adjacent beach, Wheeler said.

“When we have storms, we lose a ton of sand,” she said. “If you walk to the boardwalk, we don’t see that sand loss. It’s a great illustration project.”

Other considerations put in place: some of the cottages had to be lifted higher than they once were to be out of the ocean’s future potential pathway and retaining walls were built to withstand possible cliff erosion.

Part of the Crystal Cove permit hinged on adding an environmental educational component, with a $1 million endowment from the state specifically tied to creating a dorm out of one of the cottages that will be set aside for at least 36 nights annually for a coastal engineering and research program.

UCI School of Engineering Dean Magnus Egerstedt recalled showing up for breakfast at the Beachcomber Café a few years back as he was being recruited to the school from Georgia Tech in Atlanta, the only one wearing a suit and tie to the beach.

Egerstedt, like countless others who have soaked in the Crystal Cove scenery, said he instantly fell in love with the area.

“Crystal Cove is a beautiful canvas,” he said. “As far as classrooms go, Crystal Cove is the most inspirational, glorious classroom.”

But for Egerstedt, a roboticist who created “slothbots” that use mobile sensors to take measurements, it’s not just about the beautiful views, working with the conservancy has been an opportunity to study what is happening in the coastal environment, in order to protect it for the future.

Wheeler envisions programs for kindergartners through college seniors, the younger students studying everything from plastics pollution to tidepools, the older students focusing on coastal dynamics programs, she said. And some will be able to enjoy a two-night, three-day experience staying in a 11-bed dorm being made out of one of the cottages, which is expected to open within the next two years.

“The hope is to see it as a partnership, the kids are helping with live, real research projects,” Egerstedt said. “It’s part education and data collection, but to contribute to push the frontiers of human knowledge.”

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A paradise to be shared
More cottage rentals at Crystal Cove?
Sneak peek at additional Crystal Cove cottages being restored for overnight stays

Sanders, an expert on coastal erosion and climate change issues facing the California coast, has been working with Crystal Cove Conservancy for six years to develop the first-of-its-kind curriculum, used already the past two years by hundreds of Orange County high schoolers, many from underserved communities.

“At first, the conservancy was interested in the fact they were building new structures right against the ocean, potentially affected by sea level rise,” he said, “and they were interested in a program that could perhaps help designers of buildings and structures (by) collecting data of what was happening to the structures and coast over time.”

But Sanders said he also saw an opportunity to broaden that idea to educational programs studying the changing complexities of the coastline.

“Climate change is clearly one of the most important issues we face today,” he said, “and the coast presents a really outstanding natural laboratory to teach differences between climate change, the long-term change, and change that happens on a monthly and yearly basis, so that we can have a public that is more literate when addressing the coastal challenges we face today.”

The Coastal Dynamics initiative allows students visiting from around Southern California – some who have never been to the beach – to learn measuring techniques for beach surveys to document sand height and width at a given time, tracking erosion levels.

“We build a long-term data set of beach change,” Sanders said. “So every class that comes adds another layer of data.”

Students learn how to upload the data into a computer program to help catalog the changes that occur over time.

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A paradise to be shared
More cottage rentals at Crystal Cove?
Sneak peek at additional Crystal Cove cottages being restored for overnight stays

The curriculum pairs with environmental science classes and is part of the state’s “next generation science standards,” Sanders said.

The hope is that students discover a passion for coastal engineering and want to use their knowledge toward a career path.

“We’re grooming students first with engineering skills because they are learning to collect and plot data and model the coast at the high school level,” Sanders said. “They can go into college with programming expertise that is relevant to climate change.”

Another part of it is inspiring a future generation of engineers who can help not just study, but plan for the future of area beaches.

“The coast is an extraordinary driver to the cultural identity of Southern California. This is so core to who we are culturally. It’s a tourism driver. The beaches and coast are critically important,” Egerstedt said. “What are the big, mega questions we’re facing as a community and a global society? If we can’t wrap our minds around climate change, a lot of other things won’t matter because there won’t be a society around to enjoy them.”

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​ Orange County Register 

SURFscape to showcase latest surf, outdoor gear right on the sand in Huntington Beach

• April 27, 2023

Looking for a new surfboard and want to test it out first? Want to scope out the latest outdoor gear before it hits retail shops?

A new beachside expo, SURFscape, will be held in Huntington Beach this weekend, bringing retailers together with surfing and outdoor enthusiasts during a festival-style event.

“It’s all coming together, we’re really excited. Weather is going to be good and there’s going to be swell in the water, so we’re pretty happy to be debuting the event,” said Vipe Desai, executive director of the Surf Industry Manufacturers Association, or SIMA.

The free event to be held Saturday and Sunday, April 29 and 30, across from the Waterfront Hilton just south of the Huntington Beach Pier, aims at giving attendees an “interactive surf experience” with about 90 booths.

Among the well-known brands signed up are Quiksilver, Billabong and O’Neill, as well as up-and-coming newer brands trying to make waves in the surf space such as Mamala Surf, a women’s wetsuit brand.

“The surf market is one of the most creative and innovative industries in the world,” said SIMA President Paul Naude, also the creator of surf brand Vissla, in an announcement. “Once someone catches the wave and surf stoke, they’re a surfer and surf product buyer for life. We’re looking to grow the market with this unique consumer-facing experience in a way that’s never been done before.”

There’s currently a void in surf trade shows in Orange County, considered a hub for action-sports brands and where many major players call home. The Action Sports Retailer trade show dissolved in 2010 after 30 years, and Surf Expo is held in Florida.

Desai said surfboards and wetsuits will be available to demo, and brands will showcase everything from surfboard fins to new materials in boardshort technology. Shaping and glassing demonstrations will showcase the craft of surfboard making.

There will also be an outdoor element tapping into the new “van life” trend, with trailers, campers and other accessories “to make the outdoor adventure experience that much more exciting for people,” Desai said.

Hitchfire Grill, which attaches to the tow hitch of a vehicle, will be on hand at SURFscape to showcase its product. (Photo courtesy of SIMA)

Native like Water, a surf therapy group, will be showcasing its “SUPsquatch,” an eight-person stand-up paddleboard used for team building.

There will be Rising Tides talks throughout the weekend around environmentalism and activism with representatives from the Surfrider Foundation and other discussions around sustainability. The Bolsa Chica Conservancy will have a touch tank on hand.

Each day will feature music, with Cali Conscious and Ken Garcia performing, and there will be a Kona Big Wave beer garden and food trucks available.

An art campaign, “Split Life,” will be unveiled, showing how art and activism can combine. The art uses sea life impacted or killed by oil spills to make imprints of the animals on rice paper, using the oil to make the marks.

A Spilt Life exhibit to be showcased uses the imprints of creatures that die or are harmed due to contact with oil spills. (Photo courtesy of SIMA)

“It’s almost like taking a fingerprint of a deceased animal, instead of ink they are using the oil that killed the animal. The idea behind the campaign is to continue showcasing the harms of offshore oil spills,” Desai said.

The number of new surfers has surged since the onset of the pandemic as people looked for outdoor alternatives. Combine that with the Olympic exposure from surfing’s debut in 2021 and wave pools popping up inland, and it is expected interest among new surfers will continue in coming years, Desai said.

“From the response of brands and consumers signing up for the demos,” he said, “we feel this is going to really excite consumers and help them to find products that will make surfing and outdoor experiences that much more enjoyable.”

Get more information at: surfscape.com

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​ Orange County Register 

JSerra baseball pushes Trinity League’s three-way battle to final day of league play

• April 27, 2023

ORANGE — The Trinity League’s three-way battle over two automatic CIF-SS playoff berths will go the distance, all the way to the final day of league play.

Thank JSerra for that.

The Lions defeated Orange Lutheran 7-3 in a Trinity League game at Hart Park on Wednesday night, and that left things right where they were when the week began.

JSerra (16-9, 8-6), Orange Lutheran (18-8-1, 8-6) and Mater (15-11-1, 8-6) remain in a three-way tie for second place. Only the league’s top three finishers receive automatic playoff berths.

The fourth-place will have to hope for an at-large berth into the playoffs, which is always a dicey situation.

The logjam will finally be broken Thursday, the last day of league play. The Lions and Lancers play at 4:30 p.m. at JSerra, and Mater Dei is at Servite at 3:15 p.m.

“In essence, win and we’re in,” JSerra coach Brett Kay said. “Winning is the only thing that matters. If we win tomorrow, we go in as either the third or second place team, predicated on what Mater Dei and Servite do. If (the Lancers) win tomorrow, they are automatically second, Mater Dei is third. That pushes us to fourth.”

Santa Margarita (21-6, 13-1), the county’s No. 1-ranked team, already clinched first place.

Orange Lutheran owns the tiebreaker against Mater Dei, Mater Dei holds the tiebreaker against JSerra, and JSerra holds the tiebreaker against Orange Lutheran.

Also a factor in the situation: Orange Lutheran and JSerra are Division 1 teams, while Mater Dei is in Division 2. The CIF-SS has rules regarding ties for teams that will be in different playoff divisions.

That’s a lot to keep track of, so it’s no wonder that the coaches involved are focusing on winning Thursday.

“We’re not relying on anybody else to help us,” Orange Lutheran coach Eric Borba said. “We need to win. You control your own destiny at the end of the year. That’s all you can ask for.”

In the second inning Wednesday, JSerra took advantage of some Orange Lutheran miscues and got a dose of power from an unexpected source.

The Lions had a batter reach base on an error, scored two runs on wild pitches, a run on a fielder’s choice and got a two-run home run from No. 2 batter Lou Fujiwara to take a 5-0 lead.

Fujiwara’s home run was the first of his high school career.

“I saw a fastball inside and got the barrel on top of it,” said Fujiwara, who played for Japan in the Little League World Series. “I got lucky.”

The Lancers scored two more runs in the fifth on consecutive wild pitches.

Dominic Smaldino scored all the way from second on the first wild pitch.

With JSerra leading 7-1, the Lancers had the bases loaded with two outs in the bottom of the fifth when McAllistor Zawistoski came in to relieve starter Benjamin Reimers and got a strikeout to end the inning.

“I think the best thing for us is to put this night behind us,” Borba said. “We didn’t play a very good game. This time of year, you can’t play like that or your season is over.”

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