The Joshua Frase Foundation For Congenitial Myopathy Research, Inc.

The Joshua Frase Foundation For Congenitial Myopathy Research, Inc.

非盈利组织

关于我们

In 1995 our son Joshua was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. Through the despair and dismay, a vision of faith and hope was birthed through the Joshua Frase Foundation. Our vision seemed like a dream from the outset, but with fortitude, perseverance and resolve, we embarked on a journey to understand the pathology of this disorder by building a trans-Atlantic team of world-renowned researchers. Our endeavor to unlock the mysteries of MTM has culminated in our ability to give guarded hope to families across the world that their child might live and not die. Joshua Miles’ legacy will be one of life, hope and love as we come to the final chapter. Our goal is in sight. To learn more about the Joshua Frase Foundation please log onto www.joshuafrase.org.

网站
https://www.joshuafrase.org
所属行业
非盈利组织
规模
1 人
类型
非营利机构
创立
1996

The Joshua Frase Foundation For Congenitial Myopathy Research, Inc.员工

动态

  • Joshua’s legacy continues to touch lives, continent by continent.

    查看Alison Rockett (Rockett-Frase)的档案,图片

    CEO, Award winning Author, Global Patient Advocate, Pioneer in Regenerative Medicine, Business Development, Published Citizen Scientist

    ??The Great Wall of China! This made my week. Joshua’s book made it to all the way to China! His life and legacy continues to touch many around the world. Brooke, thank you for sharing his story that shows us the indomitable strength of HOPE, LOVE, FAITH, and the human spirit. Grab a copy on Amazon; my name, “Game Changer, A boy, A dog, and A cure. “ Always for the children #JoshuaFraseFoundation #gamechanger #genetherapy #gamechanger Paul Frase

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  • Watering the Seeds of Collaboration ?? Dear Friends, As the holiday season approaches, we at the Joshua Frase Foundation are reaching out to you with an urgent plea for your generous support. Your contribution no matter the size, will make a real difference in the lives of children battling myotubular myopathy (MTM), a rare and devasting neuromuscular disorder. Our technology and its crossover infrastructure are being used in larger indications, like Parkinson’s and cancer. In the early years, we planted the seeds of our dream, nurturing them with unwavering care. We tilled the soil of research, watered the roots of collaboration, and cultivated the promise of a brighter future. Like spring’s first buds, our foundation began to take shape, fueled by the unwavering belief and vision of a cure for myotubular myopathy. As summer unfolded, we celebrated our accomplishments, witnessing the blossoming of our efforts. We forged partnerships with leading researchers and a pharmaceutical company was built around our work, propelling our mission forward with renewed vigor. Autumn’s arrival brought a period of reflection and introspection. We paused to honor the lives lost to MTM, including our beloved son Joshua, whose legacy sparked our foundation. Amidst the falling leaves, we found solace in the memories of his unwavering spirit, his resilience, his unwavering belief in a brighter future, and his dream of a cure for his peers. Winter’s chill descended, testing our resolve, and reminding us of the challenges that lay ahead. We held onto the promise of spring, knowing that new growth would emerge. Just as nature endures the cycle of seasons, so too has our foundation weathered the storms of hope and despair. Through the years, we’ve experienced the vibrant growth of spring, the fruitful abundance of summer, the reflective stillness of autumn, and the restorative slumber of winter. Each season has shaped our journey, reminding us of the resilience we possess and the unwavering hope that drives us forward for these children. Please give at PleaseDonate.org! We are humbled by the recent Publication on our life's work, Joshua's legacy. The fight is not over. https://lnkd.in/gJDPN_qt God Bless You and Your Family Members, Alison Rockett-Frase and Paul Frase The Joshua Frase Foundation Joshua passed Christmas Eve 2010. We continue in his honor.

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