White woman whose accusation led to the lynching of Emmett Till has died at 88, coroner says

• April 27, 2023

By Dianne Gallagher and Sara Smart | CNN

Carolyn Bryant Donham, the White woman whose accusation led to the 1955 lynching of Black teen Emmett Till in Mississippi — and whose role in Till’s brutal death was reconsidered by a grand jury as recently as last year — has died in Louisiana, the Calcasieu Parish coroner’s office confirmed to CNN.

Donham, 88, died Tuesday in Westlake, according to a fact of death letter from the Calcasieu Parish Coroner.

CNN has reached out to the Till family.

In August 1955, 14-year-old Till was beaten and shot to death after he allegedly whistled at Bryant — now Donham — in Money, Mississippi.

Later, her husband, Roy Bryant and J.W. Milam, took Till from his bed and ordered him into the back of a pickup truck and beat him before shooting him in the head and tossing his body into the Tallahatchie River. They were both acquitted of murder following a trial in which Carolyn Bryant testified that Emmett grabbed and verbally threatened her.

In 2007, a Mississippi grand jury declined to indict Donham on any charges.

This is a developing story and will be updated.

The-CNN-Wire & © 2023 Cable News Network, Inc., a Warner Bros. Discovery Company. All rights reserved.

​ Orange County Register 

Cooking with Judy: An option for many an occasion

• April 27, 2023

“What can I bring?”

You’re invited for dinner, and those four words come automatically, so when Joyce Simpson of Santa Ana invited me for dinner, she suggested a side dish, and “could you possibly make it vegan?”

No problem! My go-to stuffed butternut squash from “Jewish Traditional Cooking” (Simon and Schuster, $30) by Ruth Joseph and Simon Round, was a big hit (as usual!) and was loved by carnivores and vegans alike.

I have brought this dish to potlucks many times and have astounded the vegetarians and vegans who find the stuffing so meaty they can’t believe I hadn’t hidden some in there.

Maybe you’ve eyed that big, pear-shaped giant of a squash and thought, too much trouble.

You could lose a finger cutting through that tough skin! Here’s what I do: I pierce that baby three or four times with a skewer (so it won’t burst) and microwave it on high for four or five minutes, making it easier to cut, and then proceed with the recipe, shaving off the roasting time a hair.

Precut, cubed butternut squash, available in supermarkets, makes short work of some recipes.

No exact recipe here, but I like to cut the cubes even smaller, throw in some maple syrup and brown sugar, sprinkle with salt, cinnamon, cloves, ginger and nutmeg and roast in an oiled pan at 425 degrees for 20 minutes. Then I turn the cubes with a wide spatula, and continue roasting until sufficiently brown and meltingly sticky and yummy, maybe another 15 minutes. Sometimes I turn off the oven and leave them there a while for extra crispness.

Butternut squash is a great source of fiber, vitamins A, C and E as well as manganese, magnesium and potassium. It is believed that wild squash was eaten in the Americas 10,000 years ago. Native Americans would bury it with the dead to provide nutrition, and the seeds were thought to enhance fertility. The Incas cultivated it in the 15th century.

Charles A. Leggett is credited with creating the butternut squash and coining the name.

In the mid 1940s, Leggett crossed the gooseneck squash, which was difficult to transport because of its long, gangly shape, with the giant-sized Hubbard squash. He was looking for a regularly formed squash that was compact and easier to prepare. He thought the hybrid was “smooth as butter and sweet as a nut,” and the name stuck.

Actually classified as a fruit, butternut squash can be roasted, mashed in baked goods and casseroles or puréed for soups. Combine roasted cubes with black beans for amazing vegetarian tostadas, use it in pies instead of pumpkin, add cubes to a kale salad, top a pizza with it along with spinach and goat cheese or add Greek yogurt and tahini to puréed roasted garlic and squash for a tangy Mediterranean dip.

Fullerton’s Judy Bart Kancigor is the author of “Cooking Jewish” and “The Perfect Passover Cookbook.” Her website is cookingjewish.com.

Stuffed Butternut Squash

Adapted from “Jewish Traditional Cooking” by Ruth Joseph and Simon Round. I cook the squash and prepare the stuffing in advance, but mix in pine nuts right before stuffing the squash for that extra crunch.

Serves: 6-8

Ingredients:

1 large butternut squash (at least 2 pounds)
Kosher salt and freshly ground black pepper
3 tablespoons olive oil, plus extra for brushing
1 large onion, chopped
2 garlic cloves, finely chopped
1 1/2 teaspoons good quality paprika
2 tablespoons white wine
2 tablespoons tomato paste
1 cup cooked green lentils (made according to package directions)
1 cup cooked brown rice (made according to package directions)
1/2 cup currants
1/4 cup dill, finely chopped
1/2 cup fresh cilantro, finely chopped
1 teaspoon ground cinnamon
1/3 cup pine nuts, toasted

Method:

1. Preheat oven to 375 degrees. Cut squash in half, scoop out seeds, and discard. Make crisscross cuts into flesh; brush top with oil. Season well with salt and pepper, and place in roasting pan. Bake 30 minutes.

2. In large saucepan, gently cook onions in oil until soft, but not colored. Add garlic last 2 minutes of cooking. Stir in paprika. Add wine and cook until almost evaporated. Stir in remaining ingredients. Add salt and pepper to taste.

3. Fill squash cavities with lentil-rice mixture; bake, covered, another 30 minutes or until squash is very soft.

​ Orange County Register 

4 easy ways to reduce your carbon footprint when traveling

• April 27, 2023

Travel, by nature, takes energy. Moving our bodies around the globe requires fuel, often in the form of carbon-emitting fossil fuels.

Air travel generates 11% of total U.S. transportation emissions, according to a 2021 White House fact sheet. That’s a huge number, but it points to another big carbon toll: 89% of emissions happen on the ground.

Thankfully, being a more sustainable traveler doesn’t require enormous sacrifice — or expense. Reducing the impact of getting around on the ground at your destination is easy and can improve the quality of your trip.

1. Visit transit-friendly destinations

For many destinations, the airport signs that point to “ground transportation” have only a couple of options: rideshares and rental cars. Neither of these is very carbon-friendly, according to a 2022 report from the Congressional Budget Office, which estimates that cars release just under half a pound of carbon dioxide per passenger mile traveled.

On the other hand, rail transit releases less than half as much carbon per passenger mile, making it far less emission intensive.

Choosing to visit destinations with robust public train networks, such as New York City or Tokyo, can significantly improve the eco-friendly options for getting around.

Conversely, visiting destinations that all but require a rental car, such as the island of Maui in Hawaii, can balloon your carbon footprint on top of the emissions from a long flight.

This doesn’t have to be a sacrifice. Scooting around Japan by high-speed rail is a tourist attraction in its own right, as is marveling at the miraculously on-time performance of German rail. Even taking the D train to Brooklyn has its charms.

2. Rent an electric vehicle

Only a few years ago, renting an electric car was something only the rich or very eco-conscious would have considered. Now, the logic has changed as these vehicles go mainstream and charging stations pop up everywhere from grocery stores to hotel parking lots.

Rental car company Hertz made a splash by placing an order for 100,000 Tesla vehicles in 2021. Teslas made up 10% of Hertz’s fleet by the end of 2022, according to regulatory filings.

When we checked on Hertz, you could rent a Tesla Model 3 for $78 per day plus taxes out of Los Angeles — a reasonable rate, especially given the high costs of rental cars these days. Avis, Sixt and Enterprise also have electric vehicles in their fleet in select locations.

Alternative car rental platforms such as Turo offer Teslas and other EVs, making them a good choice in locations where traditional car rental companies have only gasoline-powered options.

Bonus: Renting an EV is a great way to test the pros and cons before purchasing one yourself.

3. Stay put

This option for reducing ground transportation emissions is so simple that it’s easy to overlook. Rather than trying to see every national park in California (there are nine, after all), consider sticking to one and taking it slow.

Not only is this a great way to avoid guzzling gas, it’s also rewarding in its own right. “Slow travel” promotes connecting with local culture and people rather than checking every item off the bucket list. It also means spending less of that precious vacation time in the car.

Beyond the metaphysical and environmental benefits of taking it slow, this approach can also reduce the cost of a trip. Rather than spending money on gas, take a local class or tour, or save it for the next trip.

4. Travel in groups

A single-occupancy car emits almost half a pound of carbon dioxide per passenger mile. That number scales with the number of passengers, meaning the more passengers, the fewer (relative) emissions.

This is good news for environmentally conscious families, who tend to fill cars and vans more than couples and solo travelers. And it’s a good reason to carpool for driving-intensive trips, such as those for weddings.

Again, this is an option to reduce emissions that doesn’t cost anything. In fact, it saves money.

The bottom line

Travel is literally world-expanding, but it comes with built-in environmental costs.

And while it can seem like there’s no alternative to renting a car or hiring an Uber (and sometimes there isn’t), there are ways to reduce the footprint of ground transportation without sacrificing the quality of your trip.

Consider destinations that offer public transportation where renting a car isn’t necessary. If that isn’t an option, you can always rent an EV or fill your rental car with more passengers to reduce the impact. And you can even consider slowing down and embracing “slow travel” as a personal and environmental win-win.

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​ Orange County Register 

BeachLife Festival brings music, food and art together to celebrate beach culture

• April 27, 2023

The BeachLife Festival, a celebration of beach culture, art, food and — of course — music, returns to Redondo Beach with a lineup of more than four dozen bands on four stages, including acts such as The Black Keys, Gwen Stefani, The Black Crowes, the Pixies, Modest Mouse, Poncho Sanchez, Band of Horses, John Fogerty and others.

While the music plays, talented chefs will be cooking multi-course meals served at a pop-up restaurant right on the side of the main stage and people will be able to check out a music-inspired art show where they can buy original pieces created by famous musicians.

The festival returns to Seaside Lagoon May 5-7 and will once again be anchored by music, food and art.

The music

Get ready to take a 40-ounce chug of freedom because the festival is giving people a nostalgic look back at one of the most celebrated local bands.

“We’re amongst some really talented folks on the bill and it’s just going to be so awesome,” said Rome Ramirez, who along with original Sublime bassist Eric Wilson make up Sublime with Rome.

The band, which formed after the death of Sublime leader Bradley Nowell, is taking the stage on day two of the festival, performing Sublime’s 1992 debut album “40oz. to Freedom” in its entirety.

With their set taking place around sunset on the Lowtide Stage, which is located on the sand and faces the ocean, this could be one of the musical and emotional highlights of the festival.

“This being their first record and what put them on the map, I feel like this is a very very important thing. It’s a big commemoration of what Sublime is,” Ramirez said.

The 23-song album is a mix of hip-hop samples, rock, ska, reggae and punk with some lyrics in Spanish and includes songs like “Smoke Two Joints,” “Date Rape,” and “Badfish.” It helped launch the Long Beach band into iconic status and turned them into hometown heroes.

“I just think this is an album that still sounds fresh. It still does. I’ve been listening to the album while rehearsing and just kind of diving back in and as I’m listening back I’m like, ‘This is so fire, it’s so good,’” he said.

For Ramirez, performing the album live is a way to honor the legacy of the band and its founder.

“Eric has told me before that every time he’s up on that stage all he can think of is Bradley. And I know it sounds cheesy but Brad is with us in everything we do. This was his band, you can hear it in the music, see it in the crowd,” he said

But a day before Sublime with Rome goes old school on the sand, a seminal alt-rock band will be showing a more mature side of themselves on night one of the festival — albeit at an earlier time then they’re used to.

“We’re going on at 6:30, the sun is still out, what the (expletive) is that about,” said Joey Santiago, guitarist of the Pixies, joking about their early evening set Friday evening at the Hightide mainstage.

He quickly acknowledged though that this is actually a pretty good time slot at a festival.

“We played Coachella 2004 when the sun was setting and it is a magical moment,” he said, adding that the beachside setting will only add to the magic.

“I am all for the atmosphere here, that is perfect. I’m glad people are on the beach,” he said.

Fronted by Black Francis, the Pixies are counted as one of the most significant bands of the late 1980s alt-rock movement, serving as a major influence for artists such as Nirvana, Pearl Jam, Radiohead and Weezer.

Songs like “Here Comes your Man,” “Where Is My Mind,” and “Debaser” are alt-rock classics and last year the band, which broke up in 1993 before reuniting in 2004, released its eighth studio album, “Doggerel.”

“You’re going to hear some of the new songs for sure and then we’re doing the songs people came to see,” Santiago said.

The new album offers a less punk and a more mature sound compared to some of the band’s earlier work. It still rocks but also adds a bit of folk and pop into the mix.

“The punk days were starting to wear out for us, as they should. I don’t know about you but seeing people my age still doing that doesn’t look right,” Santiago said.

The rest of the acts on the lineup however, look just right for Santiago.

“The acts there, yeah, I’m actually going to stick around and check people out,” he said.

The food

Since the festival’s inception in 2019 food has been a key component and a headlining event as well with star chefs preparing high-end meals right on the side of the mainstage at the DAOU SideStage Experience.

Guests at the 100-seat pop-restaurant are served a $100-$275 prix fixe menu crafted by a different chef each day of the festival.

Detailed menus have yet to be ironed out but cooking on May 5 is Josiah Citrin, the Michelin Star-rated chef and owner of Santa Monica’s acclaimed Mélisse Restaurant. On May 6, Chef Antonia Lofaso, the chef and owner of three acclaimed Los Angeles restaurants — Black Market Liquor Bar, Scopa Italian Roots, and DAMA — will be taking over the kitchen.

To close out the festival on May 7, chefs Lijo George and Max Boonthanakit, owners of the Michelin-starred downtown Los Angeles restaurant Camphor will serve the side stage crowd. Camphor recently served a prix fixe dinner at Coachella.

This year there will also be brunch served May 6-7 by pastry chef Stephanie Boswell and Jacob Ramos, who is the culinary director for the BeachLife Festival.

“I wanted to put the best people on the stage to cook and I think we accomplished that,” Ramos said.

He said each chef will try to match the vibe of the music with their menus.

“When you’re listening to The Black Keys and you got Josiah Citrin, a Michelin-starred chef, we could not get a better chef to perform with a Grammy-winning artist,” he said.

“And it’s L.A., it’s right on the ocean, I don’t think there’s a better way to get an experience like that,” Ramos said.

Adding to the food experience for those who don’t want to shell out extra bills to eat well is a lineup of vendors that include locals like smashburger spot Proudly Serving, and popular food spots like Spicy Pie pizza and Poutine Brothers.

“Even the vendors, all of them have very good food, with very good chefs. You’re not going to find a bad piece of food anywhere inside this festival,” Ramos said.

The art

Artwork from One red hot chili pepper and a whole lot of talented musicians will be on display and for sale at the festival’s Punk Rock & Paintbrushes pop-up gallery, which focuses on art inspired by music.

“It began to highlight the talent of professional musicians but in a different way, through their visual art. Whether that meant painting, photography and in any medium,” said Emily Nielsen, the founder of Punk Rock & Paintbrushes.

About 400 pieces of art will be displayed at the festival site.

The lineup of rock star artists showing off their artwork this year include Red Hot Chili Peppers drummer Chad Smith, Pennywise vocalist Jim Lindberg, LAW’s Jakob Nowell, The Revivalists’ Andrew Campanelli, Jason Cruz of Strung Out and others.

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Over the years the show has expanded to include professional athletes and family members of famous musicians. So expect to see pieces by skateboarder Steve Caballero and Tiffany Anastasia Lowe, the granddaughter of country music outlaw Johnny Cash.

The artwork covers all sorts of media, from Smith’s abstract paintings to realistic work to photography to Limberg’s paintings, which incorporate his lyrics into the work.

“This fits in perfectly with BeachLife,” Nielsen said.

“Not only does it tie in the art, the music, the beach, the surfing, but I feel with BeachLife a lot of folks that come might not go to an art exhibit, which is totally OK, and this exposes a different side of art to them,” she added.

​ Orange County Register 

Chris Young, Peabo Bryson and more headed to Southern California casinos

• April 27, 2023

Cinco de Mayo will soon be celebrated nationwide, and what better way to mark the occasion than with some entertainment at Southern California casinos. Whether you want to hear some norteño or just grab some food and drinks before catching a soul act featured in Disney films or a country singer who won a reality television show.

Be sure to check the official websites for the latest event information.

Intocable

Intocable is a band from Zapata, Texas, that plays norteño and tejano music. In 2011, the Grammy Award-winning group made history by being the first norteño group to perform at a Dallas Cowboys halftime show. The band started in the 1990s and is best known for hits such as “Y Todo para Qué?,” “Llévame En Tu Viaje” and “Alguien Te Va A Hacer Llorar.” 8 p.m. Thursday, May 4, at Fantasy Springs Resort Casino, 84-245 Indio Springs Parkway, Indio. $49-$99. 800-827-2946. fantasyspringsresort.com.

Mohamed Ramadan & DJ Aseel

Mohamed Ramadan is an Egyptian actor, singer and producer. Earlier this year, the artist went viral on Tik Tok after a hashtag with his name reached over 8 million views, spotlighting his Arabic music. Some of the singer’s most notable songs include “Ya Habibi,” “Paris Dubai” and “Ensay.” The Dubai-based Arabic-music artist DJ Aseel, known for incorporating elements of traditional Arabian music into his mixes, will join Ramadan on stage. 8 p.m. May 5 at Harrah’s Resort Southern California, 777 S. Resort Drive, Valley Center. Tickets start at $132. 760-751-3100. harrahssocal.com.

Chris Young

Country singer Chris Young got his first big break when he won the reality television competition show “Nashville Star.” After winning, he released a self-titled album and signed with the country music label RCA Records Nashville. In a recent interview with Sony Music Nashville, Young also credited country singer Reba McEntire as one of the primary influences in his career. His hits include “The Man I Want to Be,” “I’m Comin’ Over” and “Who I Am with You.” 8 p.m. May 5, at Pala Casino Spa & Resort, 11154 Highway 76, Pala. $65-$110; 21-and-older only. 877-946-7252. palacasino.com.

Peabo Bryson

The Grammy-award-winning ballad and soul singer Peabo Bryson has made a name for himself with his collaborations and duets. Most of his duets feature female singers, including Celine Dion, Roberta Flack and Chaka Khan. He has also contributed to Disney soundtracks for “Aladdin” and “Beauty and the Beast.” Bryson’s most notable hits include “If Ever You’re in My Arms Again,” “Can You Stop the Rain,” and “Tonight, I Celebrate My Love.” 9 p.m. May 6 at Morongo Casino Resort & Spa, 49500 Seminole Drive, Cabazon. Tickets start at $39. 951-849 3080. morongocasinoresort.com.

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​ Orange County Register 

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