Ibero-American Muscular Dystrophy Community Form Collaboration Network, UPA! Establishes Alliance with CureDuchenne
June 12, 2008 by CureDuchenne
Filed under Press Releases
Leading organizations in Latin America, Spain and Portugal have launched a collaborative network called UPA! to accelerate awareness, information management, and fundraising for neuromuscular disorders. UPA! will focus on improving the quality of life of children already diagnosed with these conditions, as well as, the development of promising treatments and a cure for neuromuscular disorders, with initial emphasis on Duchenne muscular dystrophy, the most lethal genetic killer of young boys worldwide. UPA! has also formed a strategic alliance with California-based CureDuchenne to facilitate shared resources for increased awareness, information management and fundraising for Duchenne muscular dystrophy.
“Upa! is an expression in Spanish used often by parents to encourage their children to get up,” said Leslie Guzman, founder of UPA! and mother of Diego (diagnosed with Duchenne). Upa! reflects the love of a father when he carries his son and encourages him to go forward. It embodies loving relationships and denotes happiness among our families and communities. By using this name, we want to inspire the values of optimism, hope, determination and love.
”We’re excited to partner with UPA! and work with the Latin American and Spanish communities in a common goal. If we’re to succeed in saving boys that have Duchenne today, we must develop partnerships that raise public awareness and focus on funding Duchenne specific research,” said Debra Miller, founder of CureDuchenne and parent of a Duchenne boy. ”Duchenne research is severely underfunded. In 2006, the National Institutes of Health allocated only $18 million for Duchenne specific research, substantially below the amount of funding allocated to other childhood diseases with a much lower mortality rate.”
About Duchenne Muscular Dystrophy (DMD)
One in every 3,500 boys worldwide is afflicted with Duchenne muscular dystrophy. They will be in wheelchairs by 12 and, historically, most have not survived their teenage years. Duchenne knows no boundaries and crosses all cultures and races. The gene mutation that causes Duchenne is usually passed from mother to son, but more than one-third of cases are spontaneous. It can happen in any family. There currently is no cure, but there are now promising therapies on the horizon.
About UPA!
The formation of UPA!is an important first step to facilitate collaboration and effectively mobilize resources against Duchenne muscular dystrophy. The UPA! alliance stands strong and committed to improving today’s quality of life, accelerating the advancement of treatment options, and ultimately finding a cure for Duchenne boys.
UPA! leaders have established the following key priorities:
- Increased public awareness;
- improved quality of life for Duchenne patients;
- Increased fundraising efforts;
- Broader collaboration with global/international networks and programs;
- Improved access to information and treatment options;
- Advancement of basic and applied research
- Primary focus on Duchenne muscular dystrophy
Members of this network of collaboration include:
- ARGENTINA
- Asociación de la Distrofia Muscular de Argentina: www.fundacionfavaloro.org/IN_neurociencias.htm
- Familia Serra Argentina: www.dmdargentina.com.ar/
- BRAZIL
- Associação Brasilera de Distrofia Muscular A.C.: www.abdim.org.br/
- Associação Amigos dos Portadores de Distrofia Muscular: www.aadm.com.br/
- ECUADOR
- MEXICO
- UPA! México
Guadalupe Franco: www.dmdla.org, upamexico@dmdla.org, upaguadalupe@dmdla.org
- Distrofia Muscular Progresiva Ave Sin Vuelo: www.avesinvuelo.org
- Enlace Distrofia Muscular Duchenne Becker: www.enlaceac.org
- Sociedad Mexicana de Distrofia Muscular, Rosa Elena Escobar: rescobarmx@yahoo.com.mx
- Asociación de Distrofia Muscular de Occidente: www.admo.org.mx
- Ricardo Rojas Caballero: www.distrofia-mexico.org
- Asociación Leonesa para la Distrofia Muscular: www.admo.org.mx
- PERU
- Asociación de Distrofia Muscular del Perú: www.admperu.org
- PORTUGAL
- APN: www.apn.pt
- SPAIN
- ASEM: www.asem-esp.org
- Duchenne Parent Project España: duchennepp@orange.es
- Proyecto Deusto de Enfermedades Neuromusculares: www.neuromuscular.deusto.es
- VENEZUELA
- Fundación Paso a Paso: www.pasoapaso.com.ve
- Center Centro Terapéutico de Neurodesarrollo: center01@cantv.net
- UNITED STATES OF AMERICA
- UPA! Leslie Guzman: upa@dmdla.org, upaleslie@dmdla.org, www.dmdla.org, http://groups.google.com/group/DMDLA,
- OTHER MEMBERS
- Families in Bolivia, Chile, Colombia, El Salvador, Republica Dominicana,
Uruguay and Panama.
- Scientists, Clinicians and Friends.
For more information on UPA!, visit www.dmdla.org, or email upa@dmdla.org.
About CureDuchenne
CureDuchenne is a non-profit organization founded in 2003 by Debra and Paul Miller, parents of a Duchenne boy. CureDuchenne’s vision is its name to cure Duchenne muscular dystrophy. CureDuchenne aggressively seeks the most promising, leading edge research breakthroughs and expedites them to the clinical trial process. The ultimate goal…give the boys that have Duchenne now a chance to live a normal life by expediting the cure and/or the availability of therapies that can give quality of life to Duchenne boys, much like insulin does for diabetics.
For more information on Duchenne muscular dystrophy and CureDuchenne, 3334 E. Coast Hwy. #157, Corona del Mar, CA 92625, visit www.cureduchenne.org or call (949) 872-2552. CureDuchenne is a 501(c)(3) organization. Federal Tax ID #: 20-0299958.
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