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FSHD Society Introduces BetterLife FSHD Platform to Revolutionize Research and Patient Engagement for Muscular Dystrophy

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New platform combines patient data with health management tools to drive breakthroughs in FSHD research and treatment.

RANDOLPH, Mass., Oct. 5, 2024 /PRNewswire-PRWeb/ — The FSHD Society has released BetterLife FSHD, a groundbreaking web-based research hub and study designed to advance the understanding of Facioscapulohumeral Muscular Dystrophy (FSHD) and improve patient outcomes. Developed in partnership with Lumiio and officially launched on August 29, 2024, BetterLife FSHD is the first and only digital platform of its kind for the FSHD community, combining a patient registry with health management tools.

“By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.

Facioscapulohumeral Muscular Dystrophy (FSHD) is a hereditary muscle-weakening condition that affects approximately 1 in 8,000 individuals worldwide. This disorder is characterized by relentless, lifelong muscle degeneration, often involving the muscles of the face, shoulders, upper arms, trunk, and legs, and can result in difficulties with facial expressions, lifting objects, walking, and even basic movements. As FSHD progresses, it can lead to significant disability. The variability in symptom onset, progression, and severity makes FSHD a challenging disease to diagnose and treat effectively. This variability also underscores the need for comprehensive data collection and research to develop personalized treatment approaches.

BetterLife FSHD is set to revolutionize FSHD research by gathering comprehensive self-reported data from patients living with this highly variable disease. The platform serves dual purposes: as a patient registry that collects vital health information and patient-reported outcome measures, and as a health management tool that allows individuals to track their symptoms, access personalized resources and better manage their journey. The resulting real-world data will be invaluable for researchers, providing a clearer picture of how FSHD manifests differently among patients and identifying patterns that could lead to more accurate diagnoses and targeted therapies. Additionally, BetterLife data will help inform the decisions of payors and regulators, ultimately improving treatment access and patient care.

“The launch of BetterLife FSHD represents a clear inflection point in the FSHD community’s journey towards a cure. By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.

BetterLife FSHD data will be available to the research community in early 2025 through an online request portal. By leveraging the power of patient engagement, BetterLife FSHD aims to accelerate the pace of research, support patient access, and ultimately improve care. With multiple clinical trials currently underway for potential FSHD treatments, the launch of BetterLife FSHD represents a significant step forward in the global effort to cure FSHD.

For more information about BetterLife FSHD, visit http://www.BetterLifeFSHD.org or contact BetterLife@FSHDSociety.org.

About the FSHD Society:
The FSHD Society is a leading nonprofit organization dedicated to finding treatments and a cure for Facioscapulohumeral Muscular Dystrophy. The Society supports research, advocacy, and education initiatives aimed at improving the lives of those affected by FSHD. For over 30 years, the Society has driven major advancements in research and treatment development, with the mission to end the pain, disability, and suffering of those living with FSHD.

Media Contact

Erin Saxon, FSHD Society, 781-301-6060, erin.saxon@fshdsociety.org, FSHDSociety.org

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View original content:https://www.prweb.com/releases/fshd-society-introduces-betterlife-fshd-platform-to-revolutionize-research-and-patient-engagement-for-muscular-dystrophy-302267973.html

SOURCE FSHD Society

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CompTIA Spark introduces free high-quality technology curriculum for middle grade classrooms

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On World Teachers’ Day, the nonprofit organization highlights the importance of middle school teachers, empowers them to teach technology skills

DOWNERS GROVE, Ill., Oct. 5, 2024 /PRNewswire/ — Responding to a critical gap in technology education, CompTIA Spark has launched free technology curriculum specifically for middle grade classrooms, grades 5-8. It aims to support teachers so that they can teach the critical skills students need to succeed in whatever path they choose. The nonprofit organization worked with educators across the country to develop the curriculum.

“Getting this free resource into the hands of middle school teachers can help close the gap in technology education.”

“World Teachers’ Day celebrates how important teachers are,” says Randi Parker, chief of staff and vice president of CompTIA Spark. “And we know that middle school teachers in particular play such an important role in a student’s journey which is why they are the key to bringing technology education to more schools. We could not have developed this curriculum without them, and we can’t reach students without them.”

For about the past year, school districts as well as individual teachers have been implementing the CompTIA Spark curriculum in middle grade classrooms and providing feedback that allowed for a testing and development period prior to the full-scale launch. The schools that participated in this phase ranged from award-winning STEM schools to less-resourced ones, with all types of schools reporting the curriculum was a success and that students were engaged and excited to learn.

Getting students excited about technology and growing their confidence with hands-on learning is critical at the middle school level. Without access to quality technology education, students fall behind before they reach high school which means they do not have the digital fluency needed to succeed in school and in life. Filling this critical gap is the mission of CompTIA Spark.

With the new free curriculum, teachers can guide middle grade students through engaging project-based lessons that build capability using common applications and 21st century skills. Students gain a solid foundation in key technology concepts to prepare them for future opportunities — in high school and beyond.

Delivered through an online learning platform, the curriculum sparks interest in technology and how it is used in a wide variety of careers. For example, the Tech Exploration units have interactive lessons that show how tech skills are used in roles like product design, market research, accounting, marketing and more. Meanwhile, the Emerging Tech units focus on artificial intelligence (AI), cybersecurity, and smart home technology. Full access to the curriculum is available to middle grade educators absolutely free — to empower more teachers to teach the subject, even if they have not taught it previously.

A recent special report from Education Week highlighted how schools have been “struggling to recruit and retain math and science teachers for decades,” let alone educators who can teach technology subjects. The report also stressed the fact that current teachers need to be given opportunities to be able to teach new subjects related to emerging fields and technologies — with this being a solution to tackling the shortage.

“Because of the way the curriculum is intentionally designed, we are able to take the burden off the teacher by providing high-quality technology curriculum that middle grade teachers can use in their classroom regardless of their past experience with the subject,” says Parker. “Getting this free resource into the hands of teachers can help close the gap in technology education that currently exists at the middle school level. CompTIA Spark curriculum is free, and always will be free, because it is a gift from the tech industry to future generations.”

Districts, schools and individual teachers are invited to explore the curriculum and get started at comptiaspark.org.

About CompTIA Spark

CompTIA Spark develops free high-quality technology curriculum for middle grade classrooms to close a critical gap in technology education that exists before high school. This work improves student outcomes and success, and helps ensure a diverse talent pipeline for the technology workforce. CompTIA Spark is an independent 501(c)(3) nonprofit organization that operates as the charitable arm of the Computing Technology Industry Association (CompTIA), a leading voice and advocate for the global information technology ecosystem and a trusted provider of technical training and IT certifications. Learn more at comptiaspark.org.

MEDIA CONTACTS:
Laura Perillo and/or Cristina De Guia
news@comptiaspark.org

View original content to download multimedia:https://www.prnewswire.com/news-releases/comptia-spark-introduces-free-high-quality-technology-curriculum-for-middle-grade-classrooms-302268032.html

SOURCE CompTIA Spark

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SAUNEX Partners with Saudi SIIVC in Strategic EV Initiative

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The partnership will concentrate on the development and manufacturing of electric vehicles, enhancing industry capabilities

BANGKOK, Oct. 5, 2024 /PRNewswire/ — UNEX of the Netherlands, a global leader in the research and development of electric vehicles (EVs), and Siam Racing Automobiles (SRA) of Thailand, a world-class automotive design and engineering firm, have announced that their joint venture, SAUNEX, has entered into a strategic cooperation agreement with Saudi Arabia International Industrial Village (SIIVC). The alliance will establish a production facility for EVs in Saudi Arabia, aiming to extend their market reach across the Middle East, North Africa, and Southern Europe.

Chatchaval Jiaravanon, a member of the family that controls CP Group, addressed the audience at the signing ceremony. He highlighted the importance of automotive manufacturing as a benchmark of a nation’s industrial capabilities. Reflecting on CP Group’s past collaboration with China’s SAIC to set up a production facility for MG sports cars in Thailand, he noted that the success of automotive ventures relies critically on exemplary technology and leadership. The partnership between SAUNEX and SIIVC is aligned with Saudi Arabia’s Vision 2030 strategic initiative, emphasizing sustainable collaboration in the development, production, and marketing of EVs. The goal is to drive significant progress in Saudi Arabia’s EV sector and position SAUNEX as a beacon of successful international cooperation between Thailand and Saudi Arabia.

Mr. Jiaravanon also remarked that SAUNEX stands at the forefront of electric vehicle R&D, particularly in the application of battery swapping technology and the fields of automotive design and engineering. Their leading model, the Manto, is a luxury electric SUV that utilizes UNEX’s battery swapping technology, enhanced by SRA’s sophisticated design and engineering. It significantly outperforms competitors, offering a superior choice for future EVs free from the usual range limitations.

Top management executives from UNEX at the ceremony pointed out that under the leadership of Dr. Faisal Abdullah, CEO of SIIVC, the project aims to develop cutting-edge automotive production and battery swapping facilities in Saudi Arabia, manufacturing a full line-up of vehicle models including sedans, SUVs, and vans. The partnership also includes collaboration with CP Group and automotive supply chains in Thailand and China, aiming to create a sustainable and advanced industrial ecosystem that sets a global standard for the electric vehicle industry.

View original content to download multimedia:https://www.prnewswire.com/apac/news-releases/saunex-partners-with-saudi-siivc-in-strategic-ev-initiative-302268179.html

SOURCE UNEX

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Israel Banned from UAE BioTech Symposium

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Israeli BioTech companies will not be permitted at the quarterly event with Roadshows throughout the Arab Gulf States, including the United Arab Emirates, Kuwait, Qatar, Oman, Bahrain and Saudi Arabia

In parallel, UAE BioTech Symposium has been dedicated to the memory of The Rockefeller University Nobel Laureate Professor Dr. Günter Blobel, MD. PhD., Founder of The Friends of Dresden.

ABU DHABI, UAE, Oct. 5, 2024 /PRNewswire/ — “The board of AmCham Abu Dhabi mandated that Chinese and Russian companies are not allowed. As Founding Chairman of AmCham Abu Dhabi BioTech Committee & Chairman of UAE BioTech Symposium, I mandate that Israeli companies are not allowed, says Dr. Kambiz Shekdar, PhD.

Dr. Shekdar is Owner and Chairman of the quarterly UAE BioTech Symposium launching Nove 2-6, 2024 in Abu Dhabi and Dubai, UAE. Registration for UAE BioTech Symposium is hosted at AmCham Abu Dhabi. The detailed program is available at https://www.uaebiotechsymposium.com.

“I spent 8 years in the lab with Günter as my mentor. He would often talk about how his family was packed in a car, passing through Dresden escaping Nazi Germany when the fire bombing happened. I remember each time he remembered how he could read the pages of the newspaper by the light of the fire kilometers away. He donated his prize money to all three religions because he understood that peace is the fundament for achieving our human potential,” add Shekdar.

“I saw the firebombing destruction of Dresden from very near,” Blobel told The Times of Israel upon Dr. Blobel’s passing on February 18, 2018, “only a few kilometers away; for an 8 1/2-year-old, this was all very impressive. The bombing was so bright that you could read the newspaper by the red sky.”

Complete information about UAE BioTech Symposium is available at the Chairman’s personal portal at this link: https://linktr.ee/kambizshekdar

About UAE BioTech Symposium Chairman Dr. Kambiz Shekdar, PhD
From invention at The Rockefeller University to IPO at New York Stock Exchange to scale-up drug discovery for jointly owned Made-in-Abu-Dhabi IP in the U.A.E., Dr. Kambiz Shekdar is the first U.S. Biotech Abu Dhabi Golden Visa Inventor transitioning to the U.A.E.

Dr. Shekdar, PhD invented Chromovert® Technology while he was a graduate doctoral student in the laboratory of his mentor, the late Nobel laureate & King Faisal Prize winner Dr. Günter Blobel, MD, PhD. at The Rockefeller University in New York City. For more than 20 years, Dr. Shekdar has been pursuing applications of the same platform technology, now including pursuing the creation of a joint venture with Emirati stakeholders to implement the by-now validated research engine as part of a national-level public-private partnership for drug discovery at scale in the U.A.E. Dr. Shekdar is also a member of the Abu Dhabi, UAE chapter of American Chambers of Commerce where he is Founding Chairman of the AmCham Abu Dhabi BioTech Committee.

https://www.linkedin.com/in/kambiz-shekdar-51a52a34/

About UAE BioTech Symposium
UAE BioTech Symposium in partnership with the AmCham Abu Dhabi BioTech Committee and Masdar City will host quarterly panel discussions and lab tours in Abu Dhabi, Dubai and roadshow destinations throughout the GCC and Middle East. The events are free with attendance limited to prioritize U.S. and international BioTech owners and executives. Program details will be posted online in Arabic and in English as registration for each event goes live via the AmCham Abu Dhabi website.

Arabic site for scientific program: http://www.uaebiotechsymposium.ae
English site for scientific program: https://www.uaebiotechsymposium.com

About AmCham BioTech Committee
The AmCham BioTech Committee was formed to establish a BioTech sector in Abu Dhabi with a focus on promoting opportunities for U.S. BioTech companies with a vision to be a thought leader and facilitator for U.S. corporate interests in the emerging BioTech sector in Abu Dhabi and throughout the Middle East. Since its founding, the BioTech committee has seen a notable uptick in interest from U.S.-based companies seeking to broaden their service offerings within the region. AmCham BioTech Committee founding members include Seconcell Bio, Intelligenix Advanced Diagnostics, Extend Biosciences, Halia Therapeutics and Jones Lang LaSalle Inc (JLL).
https://amchamabudhabi.org/biotech/

CONTACT: Kambiz Shekdar, +971585820175

 

View original content to download multimedia:https://www.prnewswire.com/news-releases/israel-banned-from-uae-biotech-symposium-302268169.html

SOURCE Secondcell Bio, LLC; UAE BioTech Symposium

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