“It’s an incredible honor and privilege to shine a light on what we have already been doing so well here for years,” explains TBI Outpatient Program Manager Allison Carolan. “And to be measured and challenged to become even better for those we serve.”
According to CARF’s Managing Director of Medical Rehabilitation and Aging Services Terrence Carolan, * “Hennepin Healthcare’s Concussion Rehabilitation Program has shown a profound commitment to enhancing the lives of people affected by concussion, and this accreditation is a testament to the team’s dedication to providing person-centered care with a focus on quality and performance improvement.
While the Concussion Program standards might be new, Hennepin Healthcare has been providing TBI and concussion rehabilitation for quite some time – 20 years to be exact. Founded in 2004 by Dr. Sarah Rockswold, the TBI Outpatient Program was one of the flagship programs in the state of Minnesota and across the nation for treating not only moderate to severe TBI but also often underrecognized, mild TBI/concussions with a coordinated, interdisciplinary team approach.
“Our patients remain the driving force behind all we do,” said Dr. Min Jeong Graf, Hennepin Healthcare’s TBI Outpatient Program Medical Director and Chair of Department of Physical Medicine and Rehabilitation. “Nothing is more fulfilling than being part of a dedicated team with passion and expertise, with a shared goal of improving the lives of a patient who has experienced a TBI and is now living — and thriving – thanks to receiving professional care. We are also grateful for the resources and partnership with CARF during this successful journey.”
CARF is an independent, nonprofit accrediting body founded in 1966, whose mission is to promote the quality, value, and optimal outcomes of services through an accreditation process that centers on enhancing the lives of the persons served. For more information about the accreditation process, please visit the CARF website at carf.org.
Hennepin Healthcare is an integrated system of care that includes Hennepin County Medical Center known as HCMC, a nationally recognized Level I Adult Trauma Center and Level I Pediatric Trauma Center and acute care teaching hospital and research center in downtown Minneapolis, as well as a clinic system with primary care clinics located in Minneapolis and across Hennepin County. The system is operated by Hennepin Healthcare System, Inc., a subsidiary corporation of Hennepin County.
The grant will facilitate expansion throughout the state, allowing Free Arts to apply innovative clinically and culturally focused programs such as their Weekly Mentor, Professional Artist Series, Free Arts Days, Camps, Young Adult Empowerment, Family and Resilient Roots programs. By integrating cutting-edge therapeutic techniques with artistic expression, Free Arts aims to provide participants with the tools they need to heal from trauma and build resilience.
“Free Arts has created lasting impact in the lives of vulnerable youth,” said Renee Parsons, co-founder of The Bob & Renee Parsons Foundation. “They are leveraging the ability of art to transform, helping foster and homeless youth learn new coping skills that they will carry throughout their lives.”
This grant will enable Free Arts to expand the geographic reach of its programs beyond Maricopa County, reaching participants in Pima, Pinal, and Yavapai Counties, as well as Native nations and Southern Tucson. This expansion is essential to ensuring that all children in Arizona have access to the healing power of the arts, regardless of their location or background.
The Bob & Renee Parsons Foundation has granted more than $5 million to the organization with its first gift in 2012. In 2017, they granted Free Arts $2.5 million to establish The Bob & Renee Parsons Center for Hope & Healing, providing funding to purchase their building and operate two signature programs.
About the Bob & Renee Parsons Foundation
The Bob & Renee Parsons Foundation offers support to nonprofit organizations successfully working to empower, educate, nurture and nourish people during what is often the darkest time of their lives. Founded in 2012 by philanthropists and business leaders Bob and Renee Parsons to provide hope and life-changing assistance to the country’s most vulnerable populations, The Bob & Renee Parsons Foundation offers critical funding at critical times to those in need. The Foundation’s giving is driven by the core belief that all people – regardless of race, religion, roots, economic status, sexual orientation or gender identity – deserve access to quality healthcare, education and a safe place to call home. Follow @WeDealInHope on social media or visit TBRPF.org, to learn more about partner organizations and the important work being done in the community.
About Free Arts for Abused Children of Arizona
Founded in 1993, Free Arts for Abused Children of Arizona is a non-profit organization that transforms children’s trauma to resilience through the arts. Free Arts programs include creative elements that promote safety, self-expression, and a sense of belonging. Free Arts programs are delivered by 900 volunteer mentors and artists who serve more than 7,000 children annually through partnerships with 43 social service child welfare agencies at 120+ sites across Maricopa County. For more information on Free Arts for Abused Children of Arizona and its programs, please visit www.freeartsaz.org.
Applications for the “ACCESS GRANTED” grant open on July 15, 2024, at 11:00 am and will close on August 12, 2024, at 5:00 pm. Businesses interested in applying are encouraged to carefully read the eligibility criteria and attend the virtual information session before applying for this competitive grant. The information session will be held virtually on July 23, 2024, from 2:00 pm – 3:00 pm. More information can be found at https://businessinfrederick.com/249/ACCESS-GRANTED .
“We are thrilled to introduce the ‘ACCESS GRANTED’ program as a vital step towards creating a more equitable and thriving business community in Frederick,” says Richard Griffin, the Director of the Department of Economic Development.
“Minority and women-owned businesses historically have faced systemic barriers that have prevented them from securing the financial resources to help them grow and thrive,” said Mayor Michael O’Connor. “ACCESS GRANTED aims to create equal opportunities by injecting a total of $400,000 directly into our local economy for businesses that have historically been overlooked or marginalized, ensuring they have the resources to thrive alongside their peers. ACCESS GRANTED is not just a grant program; it is a statement of values of equity and economic justice.”
The National Highway Traffic Safety Administration (NHTSA) estimates approximately 800 to 900 lives are saved every year as a result of setting the minimum legal drinking age in the U.S. at 21.
“MADD will be forever grateful for the victims and survivors who fought so hard for this lifesaving law, and we will never forget the extraordinary leadership of then-U.S. Transportation Secretary Dole,” said Stewart, who will present Dole with a MADD Lifetime Achievement Award for the Minimum Legal Drinking Age-21 Law.
“Secretary Dole’s sustained safety leadership should inspire us all to commit to ending drunk driving,” added Stewart. “Today, we know that the key to solving this public health crisis is ensuring every new car is equipped with impaired driving prevention technology. We need the same kind of safety leadership today, in the spirit of that historic day in 1984.”
The 21-drinking-age law was signed within a week of Secretary Dole’s directive on seat belts and airbags. Her bold action resulted in the proliferation of vehicle airbags and a rise in seat belt use from 13% in 1984 to 92% today. According to USDOT data, these three lifesaving measures have saved more than 500,000 lives over the past 40 years.
Even with these extraordinary safety advances, drunk driving remains the leading cause of deaths on U.S. roads, killing more than 13,000 people in 2022. Alarmingly, drunk driving deaths have spiked 33% since 2019.
In November 2021, after years of advocacy by victims and survivors working with MADD, President Joe Biden signed bipartisan legislation – The HALT Drunk Driving Act – into law that will lead to anti-drunk driving technology being built into all new cars. The law directs the USDOT to establish a federal regulation for the technology by November 2024, then gives automakers two to three years to build the required technology into every car that rolls off their assembly line. According to the Insurance Institute for Highway Safety, when fully implemented, the technology will save 10,000 lives every year.
“I have worked hand in hand with MADD for more than forty years. As many know, I lost an uncle to a drunk driver, and the impact on my grandmother and mother was lifelong,” said Secretary Dole. “Advanced vehicle technologies now allow us to finish the job and eliminate drunk driving. These technologies must be phased in as soon as they become available.”
Earlier this year, the USDOT and NHTSA published an Advance Notice of Proposed Rulemaking for the technology and received thousands of responses from the auto industry, technology companies, advocates and the public. Those comments are under review. NHTSA’s next steps will be to publish the proposed regulation, collect more feedback during a 60-day public comment period, and then issue the final rule.
For more information on the law (known as the Honoring the Abbas Legacy to Terminate (HALT) Drunk Driving Act) and its requirements, visit madd.org/haltact.
About Mothers Against Drunk Driving Mothers Against Drunk Driving® (MADD) is the nonprofit leader in a movement to create a world where there are #NoMoreVictims of impaired driving. By working in collaboration with law enforcement to end underage drinking and all drunk and drugged driving, MADD has helped reduce drunk driving deaths by more than 50%, saving more than 400,000 lives. The organization is a vocal advocate for tougher sentencing, new laws and new technology, including implementation of the Halt Act. MADD also has provided supportive services to nearly one million victims of drunk and drugged driving at no charge through local victim advocates and its 24-Hour Victim Help Line 1-877-MADD-HELP. For more information or to make a donation, visit us at https://madd.org/ and follow MADD on Facebook, Instagram, Twitter, TikTok, LinkedIn, and YouTube.
Media Contact
Katie Alvino, Mothers Against Drunk Driving, 877.275.6233, [email protected], madd.org
Prudential Financial originally notified the U.S. Securities and Exchange Commission of a breach in February 2024 that impacted an estimated 36,000 victims. Prudential later revised the victim count in June 2024 to two-point-five (2.5) million.
Infosys McCamish System revised their estimated victim count from ~84,000 in February’s notice to six (6) million.
Credential stuffing attacks that targeted customers of the Snowflake cloud service accounted for more than 900 million of the victims reported in Q2.
However, the 1+ billion estimated total H1 victim count does not include victims of the Change Healthcare supply chain attack which company executives predict will impact “a substantial number” of U.S. residents.
“The findings in the H1 2024 Data Breach Analysis are eye-opening for many different reasons,” said Eva Velasquez, President and CEO of the Identity Theft Resource Center. “The estimated victim count is up significantly, primarily due to a small number of very large data events skewing the numbers. What is clear, though, is the fact the trends we saw emerge in 2023 that led to a record-breaking year in compromises are continuing into 2024. In some cases, such as the number of organizations impacted by supply chain attacks and the number of entities that did not list the root cause of a breach, the trends accelerated through the first half of the year. The takeaway from this report is simple: Every person, business, institution and government agency must view data and identity protection with a greater sense of urgency.”
Other findings in the H1 2024 Data Breach Report & Analysis include:
“Not Specified” remained the most reported cause of a cyberattack listed in breach notices issued in H1 2024 (68 percent).
Attacks against Financial Services companies jumped 67 percent year-over-year, making it the most compromised industry in H1 2024, followed by Healthcare companies. Reported compromises increased in ten (10) of the 16 industries tracked by the ITRC. However, compromises reported by Healthcare entities decreased year-over-year by 37 percent. The decrease knocked Healthcare from the most targeted industry to the second most frequently compromised for the first time in six years.
H1 trends reflect the increased value and use of stolen Driver’s License information. Driver’s License data was stolen in 25 percent of data breaches based on notices issued in H1 2024. The increased rate of Driver’s License data theft reflects a post-pandemic trend related to the increased use of Driver’s Licenses for identity verification in a wider variety of transactions. The number of data breaches where driver’s license data was stolen totaled 198 instances in pre-pandemic, full-year 2019 compared to 636 in full-year 2023 and 308 through June 30, 2024.
To view our 2023 Annual Data Breach Report or Q1 2024 Data Breach Analysis, click here. Anyone can receive free support and guidance from a knowledgeable live advisor by calling or texting 888.400.5530 or visiting idtheftcenter.org to live chat.
About the Identity Theft Resource Center
Founded in 1999, the Identity Theft Resource Center® (ITRC) is a national nonprofit organization established to empower and guide consumers, victims, business and government to minimize risk and mitigate the impact of identity compromise and crime. Through public and private support, the ITRC provides no-cost victim assistance and consumer education through its website live chat, idtheftcenter.org, and toll-free phone number 888.400.5530. The ITRC also equips consumers and businesses with information about recent data breaches through its data breach tracking tool, notified. The ITRC offers help to specific populations, including the deaf/hard of hearing and blind/low vision communities.
Media Contact
Identity Theft Resource Center Alex Achten Director of Communications & Media Relations 888.400.5530 Ext. 3611 [email protected]
Nicholas Corsano, a shareholder in global law firm Greenberg Traurig, LLP’s Global Labor & Employment Practice, was selected by Crain’s New York Business to its “2024 Notable LGBTQIA+ Leaders” list.
NEW YORK, July 15, 2024 /PRNewswire-PRWeb/ — Nicholas Corsano, a shareholder in global law firm Greenberg Traurig, LLP’s Global Labor & Employment Practice, was selected by Crain’s New York Business to its “2024 Notable LGBTQIA+ Leaders” list.
To qualify, candidates need to have worked in a senior role in the New York metropolitan area and identify as LGBTQIA+. According to Crain’s New York, they “specifically sought individuals with demonstrated impact on equality in the workplace and who held leadership roles in professional associations, community work, diversity and inclusion efforts, or similar undertakings.”
A leader in the community and within the firm’s LGBTQ+ Equity Affinity Group, Corsano was networking and events chair of the LGBT Bar Association of Greater New York from 2017 to 2023. He regularly attends Out Leadership and Lambda Legal events. He furthermore devotes significant time to pro bono matters, assisting various nonprofits supporting the arts, LGBTQ+ community, women, and available housing. Corsano won the firm’s pro bono award for 2023 for the New York office.
Clients often turn to Corsano for counseling related to LGBTQ+ inclusion and DEI efforts, employee and management training, employment risk mitigation, wage and hour compliance, leave laws, and other federal and state employment law compliance. Corsano also is a trusted litigator for matters involving discrimination claims, wage and hour issues, and contract disputes in a wide range of industries.
About Greenberg Traurig’s Labor & Employment Practice: Greenberg Traurig’s Global Labor & Employment Practice serves clients from offices throughout the United States, Latin America, Europe, and Asia. Members of the practice have had numerous trial wins and are frequently called upon to handle complex, bet-the-company, and large high-stake cases, including nationwide class and collective actions. On the labor side, a leading group of lawyers regularly represents management with labor-relations matters. Labor & Employment team members assist clients with complex employment issues, and design practical, proactive strategies that can be readily implemented by today’s human resources professionals. In addition, the practice is recognized by The Legal 500 United States in the areas of Labor and Employment Litigation, Labor-Management Relations, ERISA Litigation, Workplace & Employment Counseling, and Trade Secrets Litigation. Visit Greenberg Traurig’s Labor & Employment Blog for insights and analysis of the latest labor and employment developments, including legislation, regulations, cases, policies, and trends.
About Greenberg Traurig: Greenberg Traurig, LLP has more than 2750 attorneys in 47 locations in the United States, Europe and the Middle East, Latin America, and Asia. The firm is a 2022 BTI “Highly Recommended Law Firm” for superior client service and is consistently among the top firms on the Am Law Global 100 and NLJ 500. Greenberg Traurig is Mansfield Rule 6.0 Certified Plus by The Diversity Lab. The firm is recognized for powering its U.S. offices with 100% renewable energy as certified by the Center for Resource Solutions Green-e® Energy program and is a member of the U.S. EPA’s Green Power Partnership Program. The firm is known for its philanthropic giving, innovation, diversity, and pro bono. Web: http://www.gtlaw.com.
The BEST Award program honors superior security, law enforcement, emergency management, facilities management, and life safety products and services for healthcare, higher education, and K-12 school campuses. Awards are chosen by a panel of judges selected from the industry by the editorial staff of Campus Safety Magazine.
“Campus Safety takes pride in focusing on content that helps protection professionals in the healthcare and education markets keep their students, teachers, patients, visitors, and campuses safe and secure,” says Robin Hattersley, editor of Campus Safety.
“We are thrilled to receive the 2024 Campus Safety BEST Award,” commented Todd Hokunson, Chief Commercial Officer at Metrasens. “This honor reinforces our mission to support our customers in ensuring secure environments across their campuses.”
Trusted by school districts, hospitals, and corporate campuses worldwide, Metrasens Ultra systems are indispensable for weapons detection at extracurricular events and vape detection within school premises. Additionally, Metrasens detection systems play a vital role in detecting weapons within hospital emergency and behavioral health departments.
About Metrasens Metrasens is the world’s leading provider of advanced magnetic detection technologies. With a technology center and manufacturing facility in the United Kingdom, a North American sales and customer service hub in Chicago and a global network of distributors, the company’s innovative products are designed to address deficiencies in conventional screening methods and make the world safer and more secure. Metrasens’ mission is to take cutting-edge science from the laboratory and use it to create revolutionary, award-winning products that meet the distinct and diverse security needs of its customers. Metrasens’ core technologies have a wide range of real-world applications, embodied by solutions that are easy to adopt and simple to use.
Origin Story: When Founder Rachel Beider’s first baby was born in March 2020, just a few days following the first shelter-in-place orders in New York City, she realized that her experience as a new mom would be vastly different from what she had planned for and expected. Postpartum anxiety, depression, and loneliness set in. Without a community of moms surrounding her, classes and “baby and me” activities to engage in, or a designated “third space”, she lacked camaraderie with other new parents. A few years later, five months pregnant with her second child, Rachel was determined that this time would be different. She began thinking about how she could build a comforting physical space that would help her and other new parents feel supported. And thus, Canopy was born: a beautiful, safe, and intentionally-designed space where moms, dads, caregivers, and little ones can bond and find community.
Design: The historic Hecla Iron Works Building on North 11th Street in Williamsburg, Brooklyn, houses both Canopy and the newest location of Rachel’s renowned massage studio, PRESS (which has four outposts across Brooklyn and Manhattan). Gleaning inspiration from the Reggio Emilia and Montessori educational philosophies, Canopy’s open floor plan features soft rugs, cloud-inspired pillows and ceiling fixtures, mini play houses, swings, and plenty of soft toys for babies and young children to explore (all hued with soft earth tones). Crucially for caregivers, the space also boasts comfortable chairs and couches for adults to lounge on. Canopy also provides designated spaces for the littlest members of the community to safely explore without older kids. Canopy is also stocked with a full array of Healthy Baby’s safe and effective diapers, wipes, balm, and cream products for members to use.
Classes: Canopy is much more than just a play space, with a wide variety of class offerings based on a rotating schedule. Classes include World Music, Infant and Child CPR, Hypnobirthing, Baby Wearing Dance Class, Baby Book Club (story hour), Pelvic Floor Workshops, Meditation (adult class), Infant Sleep Classes, Postpartum Workshops, Baby-and-me Pilates, Family Photo Days, Sensory Workshops, Infant Massage Workshops, Postnatal Mindfulness Classes, Interactive Story Time, Baby & Me Yoga, Global Grooves for Little Explorers, Post-Natal Yoga, and Prenatal Yoga.
Classes are open to all (babies aged zero through four, and their caregivers, depending on the class), whether or not you are a member – just sign up online, bring your socks, and enjoy.
Canopy also offers regular “Parent Playdate” – weekly meet ups for the community to enjoy the space.
Parties and Events: Canopy also takes the stress out of planning memorable parties for little ones. With an easy online scheduling tool. Canopy’s base party package includes 90 minutes of open play, 30 minutes of food and cake, a dedicated team of Canopy staff (who will help out from setup to cleanup), plates and silverware, a choice from multiple color theme options, custom baby signage, juice boxes, and bottled water for 15 kids and up to 20 adults. Add-ons like pizza, balloon arches, goodie bags, a photographer, custom decor, temporary tattoos, and birthday cake and mini cupcakes are also available. Full menus and costs are available here.
Meet the Founder:
Rachel Beider is a globally recognized small business expert, bestselling author, and entrepreneur. She is the proud owner of PRESS Modern Massage, a group of award-winning massage studios in NYC. Her work has been published in Business Insider, Forbes, and HuffPost, with features on Inc. Magazine and The Wall Street Journal. She released her first book, a beginner’s guide to massage titled “Press Here” in January 2019, which has since sold over 58,000 copies and been translated into nine languages. Rachel first studied massage in Thailand on a trip through India and Southeast Asia, becoming certified in Thai Massage at the WatPo School in Bangkok. Later she continued her education at the Swedish Institute and became Licensed as a Massage Therapist. She holds certificates from the NY Institute of Aromatherapy and Ciniquieme Sens from Pratt. Rachel was also an Entrepreneur in Residence at Harvard Ventures, working with female- identifying students attending Harvard University.
Member testimonials: “What a great new play space for the neighborhood! The layout is so thoughtful and a great selection of toys and playthings for all little kids from my 18 month old to my 4 year old. Everyone had a blast and immediately napped upon leaving which is always a bonus! Highly recommend!”
“I’m a mom of two and a teacher of littles in a Reggio Emilia-based preschool. Canopy has everything I would want for my kids – and me. It has a wide range of developmentally appropriate activities for the 3 and under crowd. There’s ample space for parents to meet with friends and relax and play with their babies and toddlers. It’s light and airy, spacious, with no overstimulating bright lights and loud materials.”
“Gorgeous, thoughtful & intentional play space for kids under 4. My almost 4 year old had a blast at a birthday party here and the space feels very safe – a rare gem where you can actually relax and let the kids explore independently. The neighborhood was so in need of a fresh space like this. Highly recommend!”
Connect with us:
LOCATION
118 North 11th St, Third Floor, Brooklyn, NY 11249
“We are truly humbled to be recognized by Puget Sound Business Journal as the largest LGBTQ+ owned business in the region,” said Matthew Phillips, CEO and owner of Car Pros Automotive Group. “My family and I started Car Pros in Tacoma, WA in 1993, and more than 30 years later, I am proud that Car Pros continues to be an integral part of the Puget Sound community, contributing to the growth of Washington state’s leading economic region. Many thanks to the Puget Sound Business Journal for this honor.”
As one of the few openly LGBTQ+ dealers in the U.S., Phillips has broken multiple molds in a tradition-bound industry through his leadership, and by empowering people – specifically under-represented groups – to succeed in a workplace where respect, equity and inclusivity are pillars of the company’s culture. In 2023, he was recognized as one of Automotive News’ Notable Champions of Diversity, awarded the Silver Stevie® Award for Maverick of the Year in the American Business Awards®, and named one of Puget Sound Business Journal’s 11 Business of Pride Outstanding Voices.
Car Pros continues to receive accolades for its sales and customer service, including: the 2023 Kia President’s Club Award for Exceptional Customer Service and Sales Success; the 2023 Honda Masters Circle award recognizing the nation’s top 50 Honda dealerships; 2024 J.D. Power Dealer of Excellence for Customer Sales Experience; and named among “The Best CPO Dealers in the USA” by Auto Remarketing Magazine.
“This recognition, among others, is made possible by our outstanding Car Pros team who are dedicated to our mission of changing lives through high-performance and values-led dealerships, and committed to creating opportunity through excellence,” concluded Phillips.
Car Pros began as a small used car lot with just two employees. Together with his family, Phillips built Car Pros into a leading automotive sales and service group with more than 700 employees and nine dealerships in Western Washington and Southern California, selling over 2,400 cars per month. Car Pros serves customers in the communities of Renton, Tacoma, Glendale, Los Angeles, Huntington Beach, and Moreno Valley.
About Car Pros Automotive Group
Car Pros Automotive Group is a leading automotive sales and service group, with dealerships representing Kia, Hyundai, Honda, BMW and MINI. Founded in 1993 by Ken Phillips, Car Pros currently has annual sales of more than $1 billion and is the top selling Kia retailer in the nation, having retailed over 175,000 new Kia models. The retailer is committed to changing lives through high-performance and values-led dealerships. Led by CEO Matthew Phillips, Car Pros is shaping the future of automotive retail: Franchise, professional, tech-savvy, values driven, and people focused. Visithttps://www.carpros.com to learn more.
The RARE-X platform allows patient advocacy organizations to collect structured patient-reported and patient-provided data and make this data available to qualified researchers to advance understanding of rare diseases and drive the development of needed therapies. Data on the RARE-X platform is patient-owned and participants remain in control of how their data is used and who can access it in a de-identified format. It empowers patients with the ability to accelerate research and drug development while breaking down data silos that stymie progress. RARE-X currently serves as the host data collection platform for 95 patient advocacy groups across 63 rare disorders.
“This is a first-of-its-kind project utilizing the RARE-X platform to streamline participation and patient-reported data collection in a natural history study,” said Zohreh Talebizadeh, Ph.D., senior director of the RARE-X Research Program and RARE-X principal investigator. “We are establishing a model that other patient communities will be able to use to conduct collaborative research and advance natural history studies.”
By using the RARE-X data collection platform, participants in the natural history study will provide their data remotely through a series of surveys. This patient-reported data will be integrated with the data collected at the natural history study clinical sites. The natural history study will help researchers understand how STXBP1 disorders manifest and progress over time. This critical data can inform more meaningful endpoints for clinical trials, and reduce the time it takes to study potential new therapies to treat the condition. It is also possible that this type of data could be used as a comparator arm in a clinical trial as an alternative to the use of a placebo control.
There are already over 150 patients with STXBP1-related disorders enrolled in the RARE-X research program, so this integration with the natural history study simplifies the user experience and alleviates the burden of participating in multiple studies. Patients and caregivers retain full control over who has access to the health information that they chose to share in the RARE-X program. Clinicians, researchers, and drug developers can access de-identified data through the RARE-X platform to drive research and drug development once someone consents to share their data with them.
STXBP1 disorders are severe neurodevelopmental conditions. Patients may experience a range of symptoms including early-onset epilepsy, severe intellectual disability, developmental delay, tremors, spasticity, and dyskinesia. Some people with an STXBP1 disorder may also present with autism.
About STXBP1 Foundation STXBP1 Foundation is dedicated to finding a cure for STXBP1 Disorders while improving the lives of our patients and families. Founded in 2017, STXBP1 Foundation is a parent-led advocacy organization. STXBP1 Disorders are rare epileptic and neurodevelopmental disorders caused by changes in the STXBP1 gene. With an incidence of approximately 1 in 30,000 live births, STXBP1 Disorders are one of the most common genetic causes of epilepsy. For more information, contact [email protected] and visit https://www.stxbp1disorders.org/.
About Global Genes Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services to accelerate their path from early support and awareness through research readiness. Using a collaborative approach that involves biopharma, researchers, and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative patient-driven, open-data access initiative for rare diseases globally.
