Partners

Finding a treatment or cure is a TEAM approach. We are not in this alone and there is strength in numbers. Cure CMD has actively pursued partnerships with other organizations to help drive momentum, share strategies and resources. Partnership may come in the form of co-funding a research grant, co-sponsoring annual infrastructure costs, such as the CMDIR, and co-hosting Webinars to provide the community with information on care and management. Cure CMD embraces partnership as key to meeting our mission: finding a treatment and cure for the CMDs and related limb girdle spectrum disorders.


 

The Joshua Frase Foundation (JFF) is dedicated to continue forging a path by pressing research for a treatment and or a cure for children afflicted with CNM/MTM. JFF’s funding is over half the research dollars worldwide for this muscle disorder to date. The foundations funding has been used in advancing research in gene therapy and regenerative medicine. JFF has been a resource of information and support for families worldwide that struggle with the day to day commission to keep these children alive. For more information about the foundation or how you can make a difference in the lives of many, please log onto to joshuafrase.org.


 

A Foundation Building Strength is a non–profit organization dedicated to finding treatments for Nemaline Myopathy. For more information, please visit buildingstrength.org.


 

The LGMD2I Research Fund is a non-profit private foundation whose mission is to expedite the development of a treatment for Limb Girdle Muscular Dystrophy 2I (LGMD2I). Through its grant awards program, the LGMD2I Research Fund promotes basic research, fosters clinical trial readiness and supports translation of promising scientific discoveries into clinics. For more information on the LGMD2I Research Fund, please log onto lgmd2ifund.org.


 

Samantha Brazzo has been diagnosed with a progressive disease called Limb Girdle Muscular Dystrophy (LGMD2I). She is a beautiful little girl who faces physical challenges daily. In the midst of receiving Sammy’s diagnosis in 2010, the Brazzo Family established The Samantha J. Brazzo Foundation with the hopes of supporting the scientific efforts toward a treatment or cure for this debilitating disease. Although scientists are actively and aggressively working on a cure for this disease, without adequate funding, the research cannot continue to move forward at a rapid pace. With your help, we can provide these scientists with the financial support they need to achieve their mission of curing LGMD2I. We are a 501(c)(3) approved tax exempt public charity. In addition, we are a zero-cost non-profit organization, therefore; 100% of all donations will be used to provide an annual research grant. To find out more about our cause, please visit our website at: curelgmd.com.


 

La Fundación Andrés Marcio, niños contra la Laminopatía, es una organización sin animo de lucro, cuya principal vocación es la promoción de proyectos de investigación de una enfermedad que afecta a los niños y que se llama Laminopatía CMD, por deficit de Lamina A/C.

Esta grave y rara enfermedad afecta a muy pocos niños en el mundo, motivo por el cual ni los Estados, ni las Administraciones, laboratorios, etc. dedican recursos a investigarla, siendo los padres y familiares de estos niños quienes nos vemos en la necesidad de afrontar la captación de recursos, con el fin último de descubrir tramamientos para prolongar su vida en las mejores condiciones posibles, mientras se descubra la curación de enfermedad. Es por ello, que debemos implicar al y sensibilizar al máximo a las diferentes Administraciones e instituciones privadas para que presten toda la colaboración posible.

Es también un objetivo prioritario para la Fundación conseguir que se coordinen a nivel internacional todos los equipos de investigación, los facultativos que tratan a los pacientes y las familias de los niños enfermos, con esto se conseguirá un máximo aprovechamiento de los recursos y se acortará, sin duda, el camino hacia el tratamiento de la enfermedad. Todos los patrocinadores, colaboradores y directores de los proyectos mundiales de investigación que se realicen deben estar coordinados y aprovechar al máximo las herramientas que la tecnología actual nos brinda para una mayor efectividad. Para saber más acerca de nuestra causa, por favor visite nuestro sitio web en: fundacionandresmarcio.com.


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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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