Chromosome 1p36 Deletion Syndrome

NBA legend and SureCo Chief Impact Officer Robert Horry (left) and SureCo co-founder Matt Christopherson Robert Horry's daughter, Ashlyn, spent the first six months of her life at Texas Children's Hospital in Houston hooked up to oxygen. Not diagnosed immediately, Robert and his ex-wife, Keva, found out that Ashlyn was born with 1p36 deletion syndrome, a rare genetic disorder that causes intellectual disabilities due to a deletion of genetic material in chromosome 1. The condition is most common in females and can result in distinct facial features, limited muscle tone and seizures, according to the National Institutes of Health. After years of the parents caring for Ashlyn by learning how to clean and remove her medical instruments and taking her to physical therapy, while Robert juggled a 16-year NBA career, Robert retired from the league in 2008. "When I was in the NBA, it was 100% covered," Robert told Fierce Healthcare. "Whatever the bill was, they covered it. I know it got to a point where it was an 80/20 split." Robert won seven NBA championships in his career, winning the NBA Finals twice each with the Houston Rockets and San Antonio Spurs and three times with the Los Angeles Lakers. The Alabama alum played with legends such as Hakeem Olajuwon, Kobe Bryant, Shaquille O'Neal and Tim Duncan.  He knew he was fortunate the league was there to cover huge medical expenses, but he knew most families were not so lucky. He recalled seeing parents in the waiting room making a judgment as to whether they should waive parental rights so the state could provide care for their children since it was so costly. Once he retired, Robert initially went on COBRA, insurance coverage for people changing jobs. X-rays, even in the 1990s, he said, came out to $5,000 to $10,000. And even though other parents he met might have pretty good insurance, like a 90/10 split, some bills were so expensive that even paying 10% could still be devastating. "The NBA has great insurance, but once you retire, it's a whole other world," he said. Though some people affected with 1p36 can live into early adulthood, others die in childhood. But Ashlyn was a fighter, ultimately living until she was 18 from 1994 to 2011. Horry joins SureCo   Robert was at an unrelated charity event when he bumped into the leadership team of SureCo, a company that facilitates the administration of individualized health plans through ICHRA. "One of the best things about ICHRA is that it allows people to find the plan that fits their specific needs," said SureCo Chief Operating Officer Erik Wissig. "Group plans will put together one, two, maybe three options, none of which likely fit anyone's specific needs." ICHRA, on the other hand, finds individual plans with the right providers, cost structures and conditions, effectively making the employer just a vehicle for financial support. "To Robert's situation, he fits that category," said Wissig. "He had a very, very specific situation with likely specific physicians and specific facilities." Horry shared his story. Following the charity event, he reached out to ask how he could help advance the company's goals. He was met with surprise by the request, but SureCo immediately agreed to bring him on board. Horry's appreciation for SureCo is genuine, he says, because he rarely puts his name on things and never on things he doesn't believe in. After sitting down several years ago, Horry has slowly become more accustomed to the nuts and bolts of the health industry. "I'm coming from a basketball world into an insurance world, which is bananas," Horry explained. "I think they've been inching me into it little by little, so I'm learning more and more each and every day." This week, Horry was formally unveiled as chief impact officer at the company. He said he hopes families know of the options out there so they can take autonomy in their own lives. The public-facing role can help all people, and he encourages individuals to look at their insurance plan to see whether it's benefiting them. He also urged going to your employer to ask how it can better serve the employees, something that is advantageous in the short term and long term. And he has advice for current NBA players that might be in the same situation he faced. "Here's the thing about a lot of NBA players," he explained. "I think we depend on our agents, on our accountants to do everything for us. Deep dive into it and learn as much as possible about it. Learn how the player's association works, how the retired player's association works, even how the organization works." That educational piece is why Wissig thinks Horry will be a positive addition to the company. ICHRA represents relatively new and uncertain waters for employers, namely larger companies. But because the space is growing so rapidly, there's a lot of potential for SureCo's services to be of use to insurance carriers that are noticing the shift toward individualization. Wissig acknowledges that limited provider networks can sometimes be a concern for members, but, over time, there will be "better alignment" between care and the individual as ICHRA is adopted more. He also sees larger employers as an untapped market. If a big company wants to switch to ICHRA, the administrative burden going from several to thousands of plans could be overwhelming. SureCo's benefit selection experience, payment and funding structures, and systems integration is what sets the company apart, Wissig explained. "Let's be honest—it's broken," said Horry of the country's healthcare system. "We're out to try and alleviate some of the system."

SANTA ANA, Calif., March 27, 2024 /PRNewswire/ -- Robert Horry is best known for his clutch performances during his seven NBA title runs which earned him the moniker "Big Shot Bob." What many do not know about Horry is his decades-long battle with navigating healthcare in America. That's why today Horry has signed on as Chief Impact Officer with health insurance platform SureCo to urge Americans to demand more of their healthcare dollars. Horry's history with the American healthcare system began when his oldest child Ashlyn was born with a rare genetic disorder called 1p36 deletion syndrome. After spending years in and out of hospitals, Ashlyn passed away in 2011 at the age of 17. What Horry learned about health insurance through his daughter's struggles is something he carries with him to this day. "We were very fortunate to have access to the care we needed back then thanks to my career in the NBA," said Horry. "What was eye-opening was witnessing parents of other children have to sacrifice so much to receive the same care we did because of their insurance plan. This is a cause that's near and dear to me, and I'm glad I can honor Ashlyn's memory by helping other families unlock the quality of care they deserve." When his playing career came to an end after 16 years of the NBA taking a vested interest in the well-being of him and his family, Horry had to contend with the healthcare system on his own for the first time. It's often a challenging transition for former professional athletes, and many find themselves struggling with lingering health issues and little if any support. Seeing this happen firsthand, Horry learned everything he could to make sure he was making the best healthcare choices for his family. "I'm not an insurance expert, but I know when a plan is not a right fit for me or my family," added Horry. "SureCo is working with large employers to give Americans the freedom to choose the health insurance that's right for them—putting employees in the driver seat of their healthcare. I'm honored to be joining the SureCo team and this mission." SureCo is a healthcare and technology company that's transforming the way working Americans get their health insurance. It allows large employers to offer Individual Coverage Health Reimbursement Arrangements (ICHRA) to their employees. With an ICHRA, employees purchase the health plan of their choice from the individual market, and the company uses pre-tax funds to contribute to their premiums. "We are beyond grateful to bring Robert aboard to support SureCo's mission to make health insurance more effective for employers and their workers," said Matthew Kim, CEO of SureCo. "The businesses and employers we serve are only part of the insurance equation. Robert will rally working Americans to join the conversation and advocate for the health of themselves and their families." Horry knows firsthand that top-performing teams are cared for from the starting five to every individual bench player. As Chief Impact Officer at SureCo, Horry will be speaking with everyone from NBA vets to everyday Americans to let them know that it's okay to demand more from their health insurance and that the shortcomings they may have faced are avoidable with the right strategy. You can make a difference by sharing your experiences with high costs, denied claims, navigating complex coverage issues, and more on sureco.com/impact. Robert will be collecting these stories and sharing them with employers, benefits consultants, and policymakers to ensure better health outcomes for everyone. About SureCo SureCo is a healthcare and insurance technology company reimagining the traditional group benefits model for large employers. Businesses and benefits consultants tap into the individual health insurance market through SureCo's streamlined Individual Coverage Health Reimbursement Arrangement (ICHRA) Enrollment Platform. The technology is custom-built to enroll thousands of employees at a time into individual plans and seamlessly facilitate pre-tax payment contributions toward their premiums. Founded in 2015, SureCo leads the industry in ICHRA administration. Its leadership has the most combined experience servicing the individual market for employers in the category, and an award-winning customer support team ensures a smooth adoption for both companies and their employees. For more information, visit . About Robert Horry Robert Horry is a 7-time NBA champion who played for the Houston Rockets, Phoenix Suns, Los Angeles Lakers, and San Antonio Spurs. Today, he is a sports commentator for the Los Angeles Lakers, and now the Chief Impact Officer for health insurance platform SureCo. Known for being reliable while under pressure, Horry earned the nickname "Big Shot Bob," and at one time held the record for most 3-pointers ever during the NBA Finals. Driven to address a broken healthcare system after seeing the pitfalls of the insurance industry while dealing with health issues among family, friends, and colleagues, Horry works to help Americans find health insurance that they can rely on through SureCo. Media Contact: Adam Pines   [email protected] SOURCE SureCo