PONTE VEDRA BEACH, Fla., May 26, 2020 /PRNewswire/ --Throughout the pandemic, ventilator support has been in short supply. And for one family in Ecuador, finding a ventilator and getting it flown to the small hospital where their one-year-old son was being treated for a rare neuromuscular disorder seemed an insurmountable task.
But worlds away, two organizations on different continents used their network to not only find one, but get it donated and shipped in the nick of time all through families connected by the same thread -- having children affected by centronuclear and myotubular myopathy disorder.
One-month-old Wilson is now stable and ready to go home in Ecuador thanks the herculean efforts of Florida-based Joshua Frase Foundation and Zusammen Stark! eV (CNM-Together Strong), an association in Germany.
"The families that played a role in giving mechanical breath to this child know all too well the priceless value it holds, especially in that fragile first year with a child diagnosed with a nueromuscular disorder. "Having been through it ourselves, we know that without it, this child would pass," said Alison Rockett Frase, founder of Joshua Frase Foundation.
Wilson, like Alison's late son Joshua for whom the foundation is named, was born with myotubular myopathy, which causes very weak muscles, the patient is unable to eat without a feeding tube and requires a ventilator to breathe.
In Ecuador, the healthcare system cannot provide a portable ventilator for parents to take their child home to live out their life. "That means that his family can either chose to keep him alive and institutionalized or bring him home to perish unless they can find a way to pay for or acquire a home ventilator on their own," explained Frase.
Desperate to bring Wilson home, his family reached out to CNM Together Strong!, the association that helps families with centronuclear myopathies in Germany. They connected with Alison and the Joshua Frase Foundation, known for managing a medical equipment exchange program in the U.S.
"The logistical challenges from one country to the next, from customs and language barriers, to the updating of obsolete equipment were all overcome to save Wilson's life," said Frase. "This story shows that the beauty of humanity knows no boundaries and can span three continents, even when the world has been turned upside down."
For Wilson's parents, the gift was more than just a medical machine. "This was not just a gift of breath, but a gift of life in the truest sense," said Andre Carlozama and Daniel Augalsaca. "The joy and elation of now being able to bring Wilson home is immeasurable."
Both the Joshua Frase Foundation and CNM-Together Strong! in Germany are hoping to help the family with additional medical expenses, including maintenance of the ventilator and for doctor care while he is at home. For donations, please visit http://www.pleasedonate.organd tag "for Willson".
"Although children born with this often-fatal disorder live on borrowed time, it is essential that every family be provided the opportunity to bring their child home to spend quality time outside institutional walls," said Frase. "Every donation will mean so much for this family."
About The Joshua Frase Foundation(JFF) is a 501C3 non-profit organization that was founded in 1996; a year after Paul and Alison's son was born with an ultra rare and fatal neuromuscular disorder. Without hesitation, the foundation began funding cutting-edge research in the area of regenerative medicine, gene therapy and genetics since 1997. JFF's mission is twofold: To find a cure or treatment for centronuclear and myotubular myopathies and to support families whose lives are affected by these disorders. Not only has JFF been able to fund groundbreaking science, pioneering into a curative treatment that has the potential to transform neuromuscular research; it has also built an international community of children and their parents. The foundation's efforts have spearheaded human clinical trials for gene therapy. For more information, please visit http://www.joshuafrase.org.
About ZNM Zusammen Stark! e.V.(CNM Together Strong!) is a self-help association for myotubular myopathy and other centronuclear myopathies (CNM = ZNM). We represent (as of October 2019) 159 individuals from 52 families with a CNM in Germany, the Netherlands and Austria. As a self-help organization our main goal is to connect those affected and their families and to support each other in our daily lives. This is mainly done by our yearly family conference, conference, webinars and our closed Facebook support group. We also actively invest on research to find a treatment for these conditions. For more information please visit https://www.znm-zusammenstark.org/en.
Media Contacts: Alison Rockett Frase, Joshua Frase Foundation904-567-3933 or [emailprotected]Liz Morgan, Liz Morgan PR 904-608-3823 or [emailprotected]
SOURCE Joshua Frase Foundation
Read the original here:
Amid COVID 19 Crisis, Joshua Frase Foundation Leads Search Spanning Two Continents to Deliver Ventilator to Ailing Child in Ecuador - PRNewswire
- AskBio Receives FDA Regenerative Medicine Advanced Therapy designation for Parkinsons disease investigational gene therapy - Bayer - February 24th, 2025
- What is Regenerative Medicine? | Regenerative Medicine | University of ... - February 24th, 2025
- The quest for a communication device that tells cells to regenerate the body - Big Think - February 24th, 2025
- Transforming the future of regenerative medicine - Reuters - February 24th, 2025
- Breakthrough Alzheimer's Treatment Gets Official WHO Recognition - Major Milestone for Rare Disease Therapy - StockTitan - February 24th, 2025
- Regenerative Medicine Pioneer with 35-Year Track Record Takes Scientific Helm at ZEO ScientifiX - StockTitan - February 24th, 2025
- 101 Guide to Regenerative Medicine Types | Applications, Challenges - February 7th, 2025
- Regenerative Medicine | What is it? | ASCPM - February 7th, 2025
- Regenerative medicine and advanced therapy | NIST - February 7th, 2025
- Therapeutic Reprogramming toward Regenerative Medicine - February 7th, 2025
- Novel living biomaterial aims to advance regenerative medicine - February 7th, 2025
- UC Irvine-led discovery of new skeletal tissue advances regenerative ... - February 7th, 2025
- Top 3 Grants in Regenerative Medicine: January 2025 - RegMedNet - February 7th, 2025
- Advancements in lung regeneration: from bench to bedside - February 7th, 2025
- Entos Pharmaceuticals Awarded $4 Million USD in Funding from the California Institute for Regenerative Medicine (CIRM) for its Congenital Generalized... - February 7th, 2025
- Adia Nutrition Officially Enters $15.1 Billion Global Stem Cell Market with Domestic Treatments by Successful Opening of First Florida Location -... - February 7th, 2025
- Cell therapy weekly: iPSC therapy IND for Phase III trial cleared - RegMedNet - February 7th, 2025
- Creative Medical Technology Holdings Expands Collaboration with Greenstone Biosciences to Accelerate iPSCelz - EIN News - February 7th, 2025
- Placental Stem Cell Therapy Solution Market Size And Booming - openPR - February 7th, 2025
- Stem Cells Applications in Regenerative Medicine and Disease ... - December 6th, 2024
- Ageing of stem cells reduces their capacity to form tumours - Nature.com - December 6th, 2024
- Master of Science in Regenerative Medicine and Entrepreneurships FUSION program information session - The Daily | Case Western Reserve University - December 6th, 2024
- BioRestorative Therapies Announces Notice of Allowance of - GlobeNewswire - December 6th, 2024
- Stem Cell Therapy Strategic Business Report 2024 - - GlobeNewswire - December 6th, 2024
- University of Colorado Anschutz Medical Campus-Led Team Receives Up to $46 Million to Develop Innovative Treatment to Cure Blindness - University of... - December 6th, 2024
- Affimed Announces Acimtamig and AlloNK Combination Granted Regenerative Medicine Advanced Therapy (RMAT) Designation by the U.S. Food and Drug... - December 6th, 2024
- Navigating the hope and hype of regenerative medicine - October 14th, 2024
- Cell and Gene Therapy Investment Ticks Up After Hard Few Years - BioSpace - October 14th, 2024
- Crackdowns on Unproven Stem Cell Therapies Worked Abroad - Medpage Today - October 14th, 2024
- How Regenerative Medicine can help you get out of pain without surgery - WJLA - October 14th, 2024
- Regenity Biosciences Receives 510(k) Clearance for RejuvaKnee, a Groundbreaking Regenerative Meniscus Implant Device to Redefine the Standard of Care... - October 14th, 2024
- Buy, Sell, Hold: Cell and Gene Therapy - BioPharm International - October 14th, 2024
- Mayo Clinic offers unique regenerative medicine procedure for knee and ... - September 13th, 2024
- Regenerative Medicine to the Rescue - Cleveland Clinic - September 13th, 2024
- Regenerative medicine applications: An overview of clinical trials - September 13th, 2024
- The Progression of Regenerative Medicine and its Impact on Therapy ... - September 13th, 2024
- Immune cell injection significantly boosts healing of bone, muscle & skin - September 13th, 2024
- Regenerative Medicine Foundation - September 13th, 2024
- BridgeBio Receives FDAs Regenerative Medicine Advanced Therapy (RMAT ... - September 13th, 2024
- Tissue engineering and regenerative medicine approaches in colorectal ... - September 13th, 2024
- Tubular scaffolds boost stem cell-driven bone regeneration in skull defects - Phys.org - September 13th, 2024
- Finding the right path(way) to reduce fat accumulation in the liver - Medical University of South Carolina - September 13th, 2024
- NAMRU EURAFCENT Signs Agreement with Egypt Center for Research and Regenerative Medicine - DVIDS - September 13th, 2024
- BridgeBio Receives FDAs Regenerative Medicine Advanced Therapy (RMAT) Designation for BBP-812 Canavan Disease Gene Therapy Program - StockTitan - September 13th, 2024
- BioNexus Gene Lab Corp. Signs Strategic Partnership MOU with Shenzhen Rongguang Group to Advance Cancer Screening, Precision Medicine, and... - September 13th, 2024
- Neurona Therapeutics Receives $3.8 Million CIRM Grant for the Development of Next Generation Neural Cell Therapy Candidate - Yahoo Finance - September 13th, 2024
- Aging is associated with functional and molecular changes in distinct hematopoietic stem cell subsets - Nature.com - September 13th, 2024
- Cellino Awarded $25M in Funding from the Advanced Research Projects Agency for Health (ARPA-H) - Business Wire - September 13th, 2024
- HepaTx Enters Collaboration with Mayo Clinic to Advance Cell Therapy Technology for Liver Disease to Clinical Trials - Longview News-Journal - September 13th, 2024
- Obsidian Therapeutics Receives FDA Regenerative Medicine Advanced Therapy (RMAT) Designation for OBX-115 for the Treatment of Advanced Melanoma -... - September 4th, 2024
- Regenerative Medicine in Orthopedic Surgery: Expanding Our Toolbox - Cureus - September 4th, 2024
- Somite.ai takes pre-seed to $10M as it eyes to become the OpenAI of stem cell biology - CTech - September 4th, 2024
- Longeveron Announces Positive Type C Meeting with U.S. FDA Regarding Pathway to BLA for Lomecel-B in Hypoplastic Left Heart Syndrome (HLHS) - Yahoo... - September 4th, 2024
- Study Explores Potential Of 3D Printed Regenerative Breast Implants - Forbes - September 4th, 2024
- Nikon Announces New Image Analysis Functions to Empower Drug Discovery Research for Cancer, Neurological Disease, and Regenerative Medicine - PR... - September 4th, 2024
- Trinity researcher scores 800,000 to boost regenerative medicine - SiliconRepublic.com - September 4th, 2024
- Seeing the future: Zebrafish regenerates fully functional photoreceptor cells and restores its vision - EurekAlert - September 4th, 2024
- Regenerative Medicine Industry Projected to Surge to USD 73,084.2 Million by 2033, Growing at an 18.5% CAGR - Future Market Insights - September 4th, 2024
- What is regenerative medicine? | Northwell Health - July 2nd, 2024
- Science Saturday: A regenerative reset for aging - July 2nd, 2024
- Science Saturday: A year of new directions and advancements for ... - March 29th, 2024
- Diverse ways regenerative medicine is advancing health care - March 29th, 2024
- Stem cell-based regenerative medicine - PMC - National Center for ... - February 27th, 2024
- Regenerative medicine | NIST - February 10th, 2024
- San Jose blood stem cell donor meets 15-year-old whose life he saved in Los Angeles - The Mercury News - May 17th, 2023
- Regenerative medicine: Current therapies and future directions - April 23rd, 2023
- What Is Regenerative Medicine? | Goals and Applications | ISCRM - April 23rd, 2023
- Important Patient and Consumer Information About Regenerative Medicine ... - April 23rd, 2023
- Regenerative medicine can be a boon for those with Drug-Resistant Tuberculosis - Hindustan Times - April 23rd, 2023
- About Regenerative Medicine - Center for Regenerative ... - Mayo Clinic - April 7th, 2023
- Regenerative Medicine | National Institutes of Health (NIH) - April 7th, 2023
- Porcine Vaccine Market is estimated to be US$ 4.41 billion by 2030 with a CAGR of 7.50%during the forecast - EIN News - April 7th, 2023
- Advancing Safe and Effective Regenerative Medicine Products - March 21st, 2023
- Active Wound Care Market Rising demand for Skin Substitutes to boost the industry (2023-2033) | CAGR of 5.5% - EIN News - March 21st, 2023
- Veterinary Orthopedic Implants Market is estimated to be 421.3 Million by 2029 with a CAGR of 5.3% - By PMI - EIN News - March 21st, 2023
- ASKA Pharmaceutical : February 7 2023 EME and ASKA Announce Collaboration Agreement on Creating Novel PharmaLogical VHH to address an unmet medical... - February 8th, 2023
- A Look At Some Of The Companies Innovating In the Cutting-Edge Regenerative Medicine Field - Yahoo Finance - October 15th, 2022
- The Switch to Regenerative Medicine - Dermatology Times - October 15th, 2022
- The Alliance for Regenerative Medicine Announces Election of 2023 Officers, Executive Committee, and Board of Directors - GlobeNewswire - October 15th, 2022
- Mathematical model could bring us closer to effective stem cell therapies - Michigan Medicine - October 15th, 2022