Luka Shai Foundation

Luka Shai Foundation

非盈利组织

New York,NY 181 位关注者

Luka Shai Foundation was established in 2022 to investigate rare disease, CDG type IIr, and test potential therapeutics.

关于我们

The Luka Shai Foundation was established in 2022 by the Moalemzadehs to provide networks, advocacy, and research for a rare disease, CDG type IIr.? The foundation hopes to identify more patients with a mutation in the ATP6AP2 gene that may be undiagnosed presently.? Our research and disease models could benefit numerous CDGs as we further understand mechanisms and disease pathways of glycosylation disorders. ?The target therapeutic could provide CDG, Lysosomal Storage, and other metabolic disorders with potential treatment and our research in measuring efficacy of said therapeutics could elucidate other diagnostic tools to improve rare disease FDA approval. Luka Shai Foundation is a 501(c)(3) under the Advancium Health Network that identifies and develops potential revolutionary medical discoveries that address rare diseases, important medical device technologies, disease in children, among many other healthcare needs including health equity and management diversity.

网站
https://www.lukashaifoundation.org/
所属行业
非盈利组织
规模
2-10 人
总部
New York,NY
类型
非营利机构
创立
2022
领域
Rare Disease、Research、Therapeutics、Advocacy和Pediatrics

地点

  • 主要

    152 W 57th St

    Floor 47

    US,NY,New York,10019

    获取路线

Luka Shai Foundation员工

动态

  • 查看Luka Shai Foundation的公司主页,图片

    181 位关注者

    Brett Helsham - co-founder of the Luka Shai Foundation, had a blast speaking with Iván Martínez Dunckerand Karen Morici on Glycoast with my co-guest @albertfreedman https://lnkd.in/eqRbAzQ5 . The roll of parent is hard enough - so stressful that the Surgeon General just issued an advisory on the mental health of parents!!! Adding a child with a rare disease and special needs creates a special dynamic that can be especially tough to navigate - not just as a parent, but between siblings and your spouse. It was a privilege to share my own journey as having a child with a rare disease sandwiched between two "typical" children, how my perception of what it means to parent has changed, and most importantly, (and on world mental health day no less!) how speaking to therapists and getting on SSRI's helped get my mental health back on track so I could make the space, not just for myself, but for my children. Oxygen mask firsts! Take a listen! xx https://lnkd.in/eq3iCTHV

    查看Iván Martínez Duncker的档案,图片

    Research Professor - Glycobiology and Molecular Diagnosis Laboratory

    Joining us in this episode of Glycocast are two incredible guests: Brett Helsham, a mom navigating the world of rare diseases and a growing family, and Dr. Albert Freedman (https://lnkd.in/gp4hc6-s), a practicing child and family psychologist, advocate, and rare disease dad. Brett, Dr. Al and my co-host Karen Morici, bring valuable insights and personal stories about balancing family life, advocacy, and self-care. We’re thrilled to share their perspectives on returning to our passions, even as life grows more complex. In this episode we will explore the intersection of family, personal growth, and the complex realities of living with rare disorders when your family grows. Together we will share experiences and advice on managing the challenges and rewards of balancing parenthood and self-care in the context of rare diseases, particularly when you are managing the arrival of a new family member where joy but also chaos meet face to face. https://lnkd.in/griK4qMEq

    Rebooting: Returning to the Mic after Baby #2 While Managing a Child with a Rare Disease

    Rebooting: Returning to the Mic after Baby #2 While Managing a Child with a Rare Disease

    https://spotify.com

  • 查看Luka Shai Foundation的公司主页,图片

    181 位关注者

    Always Excites for disruption working towards cure. Congrats BioCurie and Deerfield Management

    查看Deerfield Management的公司主页,图片

    14,732 位关注者

    BioCurie, a revolutionary biotech startup working to accelerate and refine cell and gene therapy manufacturing through mechanistic AI (mAI), was recently announced as a winner of the inaugural Cure. Xchange Challenge: Health AI for Good. Its proprietary technology, called the mAI-BioCurie platform, aims to reduce the cost and develop time of CGT therapies, thus improving affordability for patients. As a winner of the Cure Xchange Challenge, Biocurie and four other AI-focused healthcare start-ups and entrepreneurs, were recognized for their potential to revolutionize #healthcare and improve #patientoutcomes. In partnership with MIT Solve, Cure created the Xchange Challenge to incubate transformative healthcare innovations. Learn more about the company here. https://www.biocurie.com/ *Cure is an affiliate of #DeerfieldManagement.

    Biocurie

    Biocurie

    biocurie.com

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