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.

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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SOURCE FSHD Society

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 German 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

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SOURCE Secondcell Bio, LLC; UAE BioTech Symposium

ZHONGSHAN, China, Oct. 5, 2024 /PRNewswire/ — As the golden autumn season peaks, the lighting industry gathers once again. The 31st China (Guzhen) International Lighting Fair will take place from October 22 to 26 in Guzhen Town, Zhongshan City, Guangdong Province. Held during the prime time for global production and sales, this event will inject renewed strength and innovative energy into the lighting industry supply chain.

Expansion and Upgrades: Grand Opening of 8 Exhibition Halls

The main venue of this year’s event, the Guzhen Convention and Exhibition Center, will follow an exhibition-store linkage model and collaborate with eight major lighting megastores within the town: Lihe Lighting Expo Center, Huayi Plaza, Star Alliance Global Brand Lighting Center, Era Lighting Center, Guzhen Chang’an Lighting Parts & Electronic City, Caosan International Lighting Parts City, Guyi Ruifeng International Lighting Fittings City, and Guyi Qingfeng LED Lighting Trading City. This “1+8+N” setup forms an expansive exhibition and sales framework and brings together over 3,500 brands and tens of thousands of industry professionals. With the perfect convergence of timing, location, and talent, the Fair will create a one-stop, 1.5 million-square-meter procurement event through an integrated exhibition, sales, and online platform.

With the full opening of the Shenzhen-Zhongshan Link, a new “golden zone” filled with business opportunities is rapidly emerging, which brings fresh growth prospects to Guzhen’s lighting industry.

The 31st China (Guzhen) International Lighting Fair is aligned with this era of rapid development and serves as a bridge for regional economic cooperation. In response to the high demand for exhibition space at the main venue in recent years, this year’s event introduces a new comprehensive Hall H, located west of Hall A, covering an exhibition area of 3,400 square meters. With all eight halls in the main venue opening simultaneously, the Fair will feature over 1,000 exhibitors and offer products that span the entire lighting industry supply chain. The event will focus on three major industry trends: smart lighting, green and low-carbon technologies, and integrated innovation, thereby driving the development of a new ecosystem for the lighting industry.

New Debuts: Nearly 100 Brands Shine in Hall H

The newly added Hall H has generated immense excitement, with nearly 100 high-quality enterprises already on board. They aim to drive business growth, expand market reach, and enhance their brand visibility and influence within the industry.

Hall H features a diverse range of product categories and companies across various tiers and showcases the platform’s strength in specialization, precision, uniqueness, and innovation.

It includes both large, well-known partners from Shenzhen and local “government project suppliers.” For example, Shenzhen Zongyou Technology Co., Ltd. specializes in manufacturing and selling portable wireless charging sockets and waterproof safety power strips and boasts over 30 invention patents and patent protection in 135 countries. They have long-standing collaborations with major brands like BYD, Haier, and Midea. Another participant is Zhongshan Dao Ba Lighting, established in 2016, with a 6,000-square-meter eco-friendly factory producing streetlight modules and solar lamps, which have earned certifications such as CE and RoHS.

The products on display in Hall H cater to both online platforms and cross-border e-commerce, featuring best-sellers as well as globally popular, patent-winning innovations. For example, Zhongshan Renzhao Lighting, a company specializing in desk lamps and nightlights, stands out with its distinctive products. For many years, they have supplied online platforms and cross-border e-commerce, earning the favor of numerous buyers due to their wide variety, stable quality, and quick delivery times. Another standout is HCNT from Zhaoqing City, an established company founded in 1999. HCNT holds domestic and international patents for magnetic levitation technology, and its products—such as magnetic levitation globes and desk lamps—are in high demand, with sales spanning both domestic and overseas markets.

The exhibitors at Hall H not only include research-driven companies from Shenzhen that integrate artificial intelligence with hardware engineering but also local providers offering mid-to-high-end custom engineering solutions. For instance, Shenzhen Index Tech uses artificial intelligence to generate hardware products and provides engineers with intelligent and efficient tools and platforms to shorten the path from concept to realization. Guangdong Weimi Intelligent Technology, which specializes in various power supplies, offers CE, CB, CCC, and RoHS-certified products, enjoys several new patents, and delivers comprehensive power supply solutions.

The Fair also features a number of national high-tech enterprises. Jiangmen Bright Lighting Technology, for example, produces lighting solutions for cultural tourism projects, roads, and factories. Foshan Zhengliang Optics, with over 20 years of experience, will showcase its newly developed secondary optical solutions, including optical lenses and reflective cups. Moreover, several outstanding brands from niche sectors will be present, such as Jiangmen Lingcheng Lighting, which specializes in explosion-proof lamps, and Guzhen Liancangzhiguang Lighting, known for its PLC stair light controllers.

From October 22 to 26, join us to witness the latest industry trends, marvel at cutting-edge innovations, admire the prowess of top enterprises, and envision the future of the industry. Let’s experience the charm of the Guzhen Lighting Fair and help craft a glorious new chapter for the lighting industry.

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SOURCE China (Guzhen) International Lighting Fair