How this Houston innovator is using his personal connection to ALS fuel his fight for a cure

guest column

Daniel Barvin has a neurodegenerative disease in his near future. He joined Houston-based Coya Therapeutics to help fight for a cure to the aggressively deadly ALS. Photo via Getty Images

We can never predict how our lives will turn out, but then maybe some of us can. Genetic testing showed that I, like my grandfather, aunt, uncle and father before me, would most likely die of amyotrophic lateral sclerosis, more commonly known as ALS, and/or frontotemporal degeneration (FTD) in my 40s.

Being 36, it’s possible that fear could have overtaken my life, but instead I chose to fight for every chance to change not only my life, but the lives of millions who are suffering or may one day suffer from neurodegenerative disease.

ALS is a rare disease that robs one of their ability to control their muscles, leading them to lose their ability to walk, talk and eventually breathe. Eighty percent of cases are sporadic (of unknown origin) and 20 percent have known genetic causes.

When I learned that I carried the C9ORF72 genetic variant, a causative genetic variant for ALS/FTD) my first instincts were to help others understand their status and where they could turn for help. I saw a vacuum for resources and understanding in the genetic ALS space and I knew that thousands were suffering in darkness.

Through the efforts of many, we created the first ever nonprofit – Genetic ALS & FTD: End the Legacy – focused on fighting for the genetic ALS and FTD communities. After making great strides to fight for our rights and access to care, I was asked if I could help my current CEO, Howard Berman, commercialize Dr. Stanley Appel’s regulatory T Cell (Treg) therapy for ALS.

I joined Coya Therapeutics in 2021 as the first employee, working to build a company that would one day bring life changing therapies to patients. Coya’s therapies are based on Dr. Appel’s discovery that neurodegenerative diseases drive an inflammatory response. As inflammation rises, it damages regulatory T cells, and when Tregs are damaged, inflammation becomes a persistent condition driving degeneration and eventually death.

It was at that point that my life changed from the advocacy world to the therapeutic world. Now over three years later, we are closer than ever to making a paradigm change for how patients with ALS and other neurodegenerative diseases are treated.

At Coya, we believe that combination biologics are the future of treating neurodegenerative diseases. COYA 302 is our lead asset, which has shown promising results in a proof-of-concept study released in March of 2023. We are currently working towards a double-blind, placebo-controlled trial for COYA 302 in ALS set to kick off later this year.

I never wanted to live a life so damned by disease, but when put between a rock and a hard place, the only choice is to fight. I don’t know how my life will end, but I hope that my children will know that I faced a great challenge head on with pride and resilience.

In the end, it is the combination of both the worlds I work in that lead to better outcomes for patients, raising awareness and lifesaving research. This ALS Awareness Month, please join us and our partners like the ALS Association, End the Legacy, and I AM ALS in raising awareness about these conditions, their risks, and treatment options.

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Daniel Barvin is the vice president of operations and patient advocacy at Coya Therapeutics.

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A Rice University study will consider how "design strategies aimed at improving civic engagement in stormwater infrastructure could help reduce catastrophic flooding." Photo courtesy of Kinder Institute

Rice University secures NSF support to look into Houston flooding

troubled waters

Houston will be the setting of a new three-year National Science Foundation-funded study that focuses on a phenomenon the city is quite familiar with: flooding.

Conducted by Rice University, the study will consider how "design strategies aimed at improving civic engagement in stormwater infrastructure could help reduce catastrophic flooding," according to a statement.

The team will begin its research in the Trinity/Houston Gardens neighborhood and will implement field research, participatory design work and hydrological impact analyses.

Rice professor of anthropology Dominic Boyer and Rice's Gus Sessions Wortham Professor of Architecture Albert Pope are co-principal investigators on the study. They'll be joined by Phil Bedient, director of the Severe Storm Prediction, Education and Evacuation from Disasters Center at Rice, and Jessica Eisma, a civil engineer at the University of Texas at Arlington.

According to Boyer, the study will bring tougher researchers from across disciplines as well as community members and even elementary-aged students.

"Our particular focus will be on green stormwater infrastructure—techniques like bioswale, green roofs and rain gardens—that are more affordable than conventional concrete infrastructure and ones where community members can be more directly involved in the design and implementation phases,” Boyer said. “We envision helping students and other community members design and complete projects like community rain gardens that offer a variety of beneficial amenities and can also mitigate flooding.”

Rice's Severe Storm Prediction, Education and Evacuation from Disasters Center, or SSPEED Center, is a leader in flood mitigation research and innovation.

In 2021, the center developed its FIRST radar-based flood assessment, mapping, and early-warning system based on more than 350 maps that simulate different combinations of rainfall over various areas of the watershed. The system was derived from the Rice/Texas Medical Center Flood Alert System (FAS), which Bedient created 20 years ago.

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This article originally ran on EnergyCapital.

Houston Community College and its partner received funding that will go toward creating a certificate program that will launch in the fall 2022 semester as part of The Resilient Workforce Collaborative. Photo via HCC

Houston college system snags part of $3.3M investment in resiliency innovation

impact investment

Houston Community College and partners received a $1.8 million grant from JP Morgan Chase this month with the goal of training underserved Houstonians in jobs that will help boost the city's preparedness for the aftermath of natural disasters.

The funds will go toward creating a certificate program that will launch in the fall 2022 semester as part of The Resilient Workforce Collaborative.

“The Resilient Workforce Collaborative brings together the public sector, private sector, higher education institutions, and our nonprofit partners to make transformational change in our most underserved neighborhoods,” Mayor Sylvester Turner says in a statement. “The collaborative complements our efforts within the Complete Communities to prepare low-to-moderate income Houstonians for high-demand jobs and increase the diversity of candidates in the talent pipelines for green careers that will advance our city’s resilience. This resourceful partnership is a welcomed addition to Houston’s workforce development landscape.”

The collaborative will operate out of HCC's Resiliency Center of Excellence, which was first announced in May and is slated to open its $35 million Resiliency Operations Center at HCC's Northeast College in 2024. Other members of the collaborative include City of Houston, Harris County, Workforce Solutions Gulf Coast, Resilience Innovation Hub, American Youth Works, WorkTexas, TRIO Electric, TRIO Education, Memorial Assistance Ministries, South Union CDC, Impact Hub Houston, Neuhaus Education Center, TXRX Labs, Volunteers of America-TX, Wesley Community Center, and JPMorgan Chase.

The program will aim to help residents who come from some of Houston’s most underserved and under-resourced neighborhoods find career opportunities in the clean energy, disaster response, utilities, trades and manufacturing fields. According to HCC, "an important element of the collaborative is employers changing some of their hiring practices to emphasize specialized training certificates over traditional 4-year degrees."

So far, partnering employers include The City of Houston, Harris County and TRIO Electric—and the collaborative is looking for more employers and funders to support its mission.

“This collaborative provides a ‘go-to place’ for Houstonians to learn skills that will lead to good paying jobs. It is a better system because it’s set up to fulfill needs that already exist in the workplace,” HCC Chancellor Cesar Maldonado said in a statement.

HCC and the City of Houston signed a memorandum of understanding in August, on the five-year anniversary of Hurricane Harvey, that the organizations would train 500,000 citizens, employees, small businesses, volunteers, and first responders in new resiliency training programs starting this fall.

At the time, seven courses in resiliency were announced, with an additional 30 courses slated to be added in 2023. The program will be offered at 22 HCC locations.

A Rice University professor has developed a new early warning system and planning tool for the city of Houston. Photo courtesy of Kinder Institute

Rice University debuts new flood alert system for Houston

water feature

It's no secret: certain areas around Houston are at a high risk of flooding. And risks associated with such natural disasters become even more substantial in the middle of a pandemic.

"What if first responders have to go to a shelter, a nursing home, or another facility where there's COVID, right in the middle of a flood," Phil Bedient, director of Rice University's Severe Storm Prediction, Education and Evacuation from Disasters (SSPEED) Center, asks in a statement.

His solution? To develop a new early warning system and planning tool for the city of Houston to help hospitals and other critical facilities on the watersheds of Brays, Sims, Hunting and White Oak bayous respond.

"The idea is to provide a tool that can help emergency managers better deal with situations with multiple risks," he says.

Dubbed the Flood Information and Response System (FIRST), the tool is a radar-based flood assessment, mapping, and early-warning system based on more than 350 maps that simulate different combinations of rainfall over various areas of the watershed. The maps are compared to a weather radar and stream gauges on the bayous to alert users of likely scenarios during a weather event.

FIRST was derived from the Rice/Texas Medical Center Flood Alert System (FAS), which Bedient created 20 years ago. The latest iteration, FAS5, debuted in 2020. Since the product's creation it has accurately alerted users in more that 60 storms and has warned hospital officials in the TMC of the threat of rising water in the area more than two hours before it would eventually occur, according to a statement.

FIRST was funded by federal CARES Act dollars and commissioned by the Houston Health Department, following concerns that overflows at wastewater treatment plants could potentially expose communities to the COVID-19, Loren Hopkins, chief environmental science officer for the Houston Health Department and professor in the practice of statistics at Rice, says in a statement.

"The FIRST model assessed what areas and facilities are at highest risk of overflows that could spread SARS-CoV-2 and other pathogens during flooding and similar events," Hopkins added. "During a flood, the information gained through this system will inform the public health response to control the spread of pathogens that could make people sick."

CARES funds for FIRST's development were approved in the fall and Rice University undergraduates jumped at the opportunity to build out the product by the December 31 deadline, using hydrologic software and maps they had created with training from Bedient about a year prior.

"They performed herculean tasks," Bedient says. "Our deadline was hard and fast, and they helped us deliver the operational project and report on time."

FIRST was reported to have worked well during May's deluge, and will continue to be refined as more data, storms, and floodwaters arise. A demo is available to test online.

Houston has proven to be resilient time and time again. In a guest column, Amy Chronis explores if 2020 has the potential to be Clutch City's breaking point. Photo via Pexels

Clutch City: Is 2020 a time of devastation or doubling down for Houston?

guest column

"Clutch City" may be Houston's most befitting nickname — and it has proven to stand the test of time. Whoever coined the term likely had no idea in how many ways this moniker would be tested and upheld over the next 20-plus years.

Time and time again the fourth largest city in America has proven to be resilient, whether it be a natural catastrophe, tough economic times or the global pandemic. But, will the multi-dimensional stresses of 2020 break the city's winning streak?

Houston is also well known for being The Energy Capital of the World, a qualifier that has meant record revenue and jobs growth, as well as weathering several oil and gas economic down cycles. While the city has taken many hits from previous downturns, it has always been able to recover. The oil, gas and chemicals downturn of 2020, however, is unlike anything we've ever seen before — and could fundamentally transform the energy industry, as well as Houston's economy.

This year, the industry has been grappling with the energy transition while it is also is facing the "Great Compression," sustained low oil prices on top of diminished oil demand from the global pandemic, and the "Great Crew Change." The confluence of these simultaneous challenges could have profound impacts on the workforce and future of work in the oil, gas and chemicals industry. According to Deloitte's latest report, 70 percent of jobs in the industry lost during the pandemic may not return by the end of 2021.

The silver lining "clutch" play may be that Houston already has been on the path and is continuing to diversify its businesses, even within the energy and industrial sectors. The Greater Houston Partnership touts Houston's key industries beyond energy, including advanced manufacturing, aerospace and aviation, life sciences and biotechnology, digital technology and transportation and logistics. Notably, the common thread linking these industries is the need for greater digitalization of and within business models.

The encouraging news is that Houston has anticipated this need and factored it into its future planning. For example, the development of Ion Houston is designed to be the anchor of a 16-plus acre Innovation District in Houston dedicated to innovation, entrepreneurship and technology. This could be the type of investment the city needs to focus on as we grapple with a hard-hit economy. At this point, it is beyond choosing to prioritize moving to what's been called Industry 4.0 — digitalization should be a priority for companies wanting to survive and stay competitive.

According to an analysis conducted by the Greater Houston Partnership of the largest Texas cities, the following sectors had the most VC deals in technology over the last 20 years: life science, oil and gas, oncology, B2B payments, infrastructure and FemTech. The analysis also showcased the top niche tech specialties outside of oil and gas spanned multiple industries including life sciences, legal, space, environmental and FinTech. Houston's dual effort of industry diversification and focus on digitalization has been prescient.

COVID-19 has further accelerated the importance for companies across sectors to get on the fast track to Industry 4.0. The time for transformation is now. The oil, gas and chemicals sector, as well as all sectors, should start building a workforce for the future in order to survive and break the barriers to entry to Industry 4.0. This effort typically includes attracting people across generations by promoting sustainability, offering new digital ways of working, making flexible/remote working a permanent reality while building a sense of pride amongst the workforce toward the work product and organization itself.

Organizational agility is one way through this downturn. Challenging traditional ways of thinking and functioning will likely be required for companies to remain competitive.

The advance work and planning Houston has undertaken to diversify its economy by expanding its industries and focusing on digitalization and the future of workforce, together may ensure that we keep Houston strong and that the "Clutch City" lives up to its name.

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Amy Chronis is the Houston managing partner at Deloitte.

Mayor Sylvester Turner was just named chairman of the Resilient Cities Network. Photo courtesy of The Ion

Mayor Turner recognized nationally for progress of moving Houston toward resiliency

Turner's plans

In the past five years, six federally declared flooding disasters have wreaked havoc in Houston — most notably Hurricane Harvey in 2017. Now, you might say Houston stands tall as a hub of resilience when it comes to disaster preparedness and myriad other pressing issues.

The Texas chapter of the American Planning Association recently honored Mayor Sylvester Turner's Resilient Houston initiative as the top entry in the resilience category of the chapter's annual awards program. In addition, Turner was just named chairman of the Resilient Cities Network.

With backing from Shell Oil Co., the City of Houston hired its first chief resilience officer, Marissa Aho, in 2019 and developed a multibillion-dollar resilience strategy to address threats from hurricanes, tropical storms, floods, and climate change. The plan also seeks to boost the resilience of Houston's economy, neighborhoods and natural resources.

"Our efforts need to be bold, transformative, and aligned to achieve the outcomes Houstonians deserve," Turner said in unveiling the resilience plan in February. "Resilient Houston is a framework for transformative change that comes from thinking and acting together to build and grow Houston's long-term resilience. We will need our partners and every Houstonian at the table to achieve this vision."

Dallas and El Paso also have resilience plans in place.

Houston's resilience effort outlines a number of ambitious goals, such as:

  • Updating city building codes and standards by 2030 to reduce damage from disasters.
  • Attracting or incubating 50 Energy 2.0 companies in the Houston area by 2025.
  • Planting 4.6 million new native trees by 2030.
  • Building at least 375,000 homes in Houston for all income levels by 2050.
  • Providing all Houstonians with easy access to high-frequency public transportation by 2050.

As explained by Rice University's Kinder Institute for Urban Research, hurricanes and floods are examples of "acute shocks" in terms of resilience. These are sudden, large-scale events that disrupt and endanger life. Other shocks include economic crisis, cyberattacks, terrorism, chemical disasters, and extreme heat.

The Kinder Institute points out that Houston's resilience strategy not only addresses these shocks but also takes on "chronic stresses" that hamper recovery from these shocks. Those stresses include poor air quality, health disparities, crime, economic inequality, urban sprawl, and limited access to education.

"Stresses do not impact every Houstonian the same way," says the institute, which helped develop the Resilient Houston project.

Startups participating in Houston's Ion Smart and Resilient Cities Accelerator are tackling many of the same challenges that Resilient Houston is. The accelerator's second cohort launched in April with six startups.

Funded by Microsoft Corp. and Intel Corp., the accelerator "is committed to solving challenges Houstonians face every day," Christine Galib, director of the accelerator, said in an April release. "We connect participating startups with mentors, partners, and stakeholders so they gain access to the resources they need to build, validate, and scale their technologies. Together, we are building a safer, smarter, and more accessible city for all Houstonians."

Houston's push for resilience meshes with Turner's new role as chairman of the Resilient Cities Network. The network is a global city-led nonprofit that aims to "empower cities to help them build a safe, equitable, and sustainable future for all."

"The reach, achievements, and vision of the Resilient Cities Network are impressive. I'm honored to be part of an organization that supports the critical needs of vulnerable communities by implementing projects that address multiple shocks and stresses and are improving the lives of people," Turner says in a release.

Among other goals, the network strives to strengthen local economies and bolster local campaigns to combat climate change.

Supported by $1.8 million from Shell, the City of Houston joined the Resilient Cities Network in August 2018. Houston is the U.S. headquarters for Shell.

"A year after Hurricane Harvey, Houstonians can clearly say we didn't let the storm get the best of us. Nevertheless, there's still work to be done across a wide range of challenges that we share as a community," Bruce Culpepper, who then was president and U.S. chairman of Shell, said in a 2018 release about his company's backing of Resilient Houston.

"Building long-term resiliency is much more than disaster response," Culpepper added. "It's about enabling the people of our city to thrive."

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Houston team develops low-cost device to treat infants with life-threatening birth defect

infant innovation

A team of engineers and pediatric surgeons led by Rice University’s Rice360 Institute for Global Health Technologies has developed a cost-effective treatment for infants born with gastroschisis, a congenital condition in which intestines and other organs are developed outside of the body.

The condition can be life-threatening in economically disadvantaged regions without access to equipment.

The Rice-developed device, known as SimpleSilo, is “simple, low-cost and locally manufacturable,” according to the university. It consists of a saline bag, oxygen tubing and a commercially available heat sealer, while mimicking the function of commercial silo bags, which are used in high-income countries to protect exposed organs and gently return them into the abdominal cavity gradually.

Generally, a single-use bag can cost between $200 and $300. The alternatives that exist lack structure and require surgical sewing. This is where the SimpleSilo comes in.

“We focused on keeping the design as simple and functional as possible, while still being affordable,” Vanshika Jhonsa said in a news release. “Our hope is that health care providers around the world can adapt the SimpleSilo to their local supplies and specific needs.”

The study was published in the Journal of Pediatric Surgery, and Jhonsa, its first author, also won the 2023 American Pediatric Surgical Association Innovation Award for the project. She is a recent Rice alumna and is currently a medical student at UTHealth Houston.

Bindi Naik-Mathuria, a pediatric surgeon at UTMB Health, served as the corresponding author of the study. Rice undergraduates Shreya Jindal and Shriya Shah, along with Mary Seifu Tirfie, a current Rice360 Global Health Fellow, also worked on the project.

In laboratory tests, the device demonstrated a fluid leakage rate of just 0.02 milliliters per hour, which is comparable to commercial silo bags, and it withstood repeated disinfection while maintaining its structure. In a simulated in vitro test using cow intestines and a mock abdominal wall, SimpleSilo achieved a 50 percent reduction of the intestines into the simulated cavity over three days, also matching the performance of commercial silo bags. The team plans to conduct a formal clinical trial in East Africa.

“Gastroschisis has one of the biggest survival gaps from high-resource settings to low-resource settings, but it doesn’t have to be this way,” Meaghan Bond, lecturer and senior design engineer at Rice360, added in the news release. “We believe the SimpleSilo can help close the survival gap by making treatment accessible and affordable, even in resource-limited settings.”

Texas among 5 hardest working states and more innovation news to know

Trending News

Editor's note: As we look back at the top Houston innovation news for the first half of September, reports show that Texas is one of the hardest working states, while local startup activity has slowed down. Plus, exciting medical innovation advancements. Here are the most-read InnovationMap stories from September 1-14.

1. Texas is the 4th hardest working state in America, report finds

Texas is home to some of the hardest workers. Photo via Getty Images

It's no secret that Texans are hardworking people. To align with the recent Labor Day holiday, a new WalletHub study asserts that the Lone Star State is one of the five most hardworking states in America for 2025. The report ranked Texas the fourth most hardworking state this year, indicating that its residents are working harder than ever after the state fell into seventh place in 2024. Continue reading.

2. UH receives $1M grant to advance research on rare pediatric disorder

The Cynthia and George Mitchell Foundation has granted $1.1M to the University of Houston to support research on Usher Syndrome. Photo courtesy University of Houston.

The University of Houston has received a two-year, $1.1 million gift from the Cynthia and George Mitchell Foundation to advance research on a rare genetic disorder that can lead to both deafness and blindness in children, known as Usher Syndrome. The current grant will support the research of UH biomedical engineering professors Muna Naash and Muayyad Al-Ubaidi, who work in the Laboratory for Retinal Molecular and Cellular Biology and Gene Therapy in the Cullen College of Engineering. Continue reading.

3. Houston's surge in new startups cools since pandemic peak, study shows

Startup applications in Houston have dipped since their 2021 peak, even as national entrepreneurship hits record highs, according to a new report from The Kaplan Group. Photo via Getty Images.

Startup activity in the Houston metro area has dipped since its pandemic peak, according to a new study. Dating back to 2005, the volume of applications to form new businesses in the Houston area hit its highest level in 2021 (151,804). Since then, though, the application volume has fallen, according to the study, conducted by business debt collection agency The Kaplan Group. Continue reading.

4. TMC lands $3M grant to launch cancer device accelerator

Recent funding from CPRIT will help launch the new Accelerator for Cancer Medical Devices. Photo via TMC

A new business accelerator at Houston’s Texas Medical Center has received a nearly $3 million grant from the Cancer Prevention and Research Institute of Texas. The CPRIT grant, awarded to the Texas Medical Center Foundation, will help launch the Accelerator for Cancer Medical Devices. The accelerator will support emerging innovators in developing prototypes for cancer-related medical devices and advancing them from prototype to clinical trials. Continue reading.

5. 10 Houston billionaires make Forbes' list of richest Americans in 2025

Pictured: Nancy and Richard Kinder, the richest Houstonian, according to the Forbes 400. Photo by Michelle Watson/Catchlight Group

America's wealthiest billionaires are $1.2 trillion richer in 2025, bringing their collective worth to a staggering $6.6 trillion. And Houston's own Richard Kinder has become the richest billionaire in the city, according to the new Forbes 400. The Kinder Morgan chairman is the 11th richest Texas resident and ranks as the 108th richest American. Kinder also dethroned Tilman Fertitta to claim the title as the wealthiest Houstonian. The annual Forbes 400 list is a definitive ranking of the wealthiest Americans, using interviews, financial data, and documentation provided by billionaires and their companies. Continue reading.

Oxy's $1.3B Texas carbon capture facility on track to​ launch this year

gearing up

Houston-based Occidental Petroleum is gearing up to start removing CO2 from the atmosphere at its $1.3 billion direct air capture (DAC) project in the Midland-Odessa area.

Vicki Hollub, president and CEO of Occidental, said during the company’s recent second-quarter earnings call that the Stratos project — being developed by carbon capture and sequestration subsidiary 1PointFive — is on track to begin capturing CO2 later this year.

“We are immensely proud of the achievements to date and the exceptional record of safety performance as we advance towards commercial startup,” Hollub said of Stratos.

Carbon dioxide captured by Stratos will be stored underground or be used for enhanced oil recovery.

Oxy says Stratos is the world’s largest DAC facility. It’s designed to pull 500,000 metric tons of carbon dioxide from the air and either store it underground or use it for enhanced oil recovery. Enhanced oil recovery extracts oil from unproductive reservoirs.

Most of the carbon credits that’ll be generated by Stratos through 2030 have already been sold to organizations such as Airbus, AT&T, All Nippon Airways, Amazon, the Houston Astros, the Houston Texans, JPMorgan, Microsoft, Palo Alto Networks and TD Bank.

The infrastructure business of investment manager BlackRock has pumped $550 million into Stratos through a joint venture with 1PointFive.

As it gears up to kick off operations at Stratos, Occidental is also in talks with XRG, the energy investment arm of the United Arab Emirates-owned Abu Dhabi National Oil Co., to form a joint venture for the development of a DAC facility in South Texas. Occidental has been awarded up to $650 million from the U.S. Department of Energy to build the South Texas DAC hub.

The South Texas project, to be located on the storied King Ranch, will be close to industrial facilities and energy infrastructure along the Gulf Coast. Initially, the roughly 165-square-mile site is expected to capture 500,000 metric tons of carbon dioxide per year, with the potential to store up to 3 billion metric tons of CO2 per year.

“We believe that carbon capture and DAC, in particular, will be instrumental in shaping the future energy landscape,” Hollub said.

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This article originally appeared on our sister site, EnergyCapitalHTX.com.

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