Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

#¡MayMomentum está aquí!

Hoy, la Open Medicine Foundation (OMF) lanza su tercer May Momentum anual, nuestra campaña de recaudación de fondos en solidaridad con el Día Mundial del Síndrome de Fatiga Crónica/Encefalomielitis Miálgica (SFC/EM) que se celebra el 12 de mayo y está dedicado a las millones de vidas afectadas por esta y otras enfermedades crónicas complejas relacionadas.

Estamos trabajando para aliviar las crueles limitaciones que esta enfermedad impone en nuestra comunidad y para proteger a millones de personas más que podrían padecerla algún día. Nuestro May Momentum de 2020 tiene lugar en el contexto de la COVID-19: esto nos desafía a todos a mantenernos centrados, a ser valientes y, lo que es más importante, a ser optimistas.

Y tenemos motivos para ser optimistas. Solo tiene que escuchar al Dr. Ron Davis, director del Consejo consultivo científico de la Open Medicine Foundation:

«A lo largo de mayo, vamos a revelar tres nuevos proyectos que han sido seleccionados por las implicaciones que tienen en la vida real de los pacientes con SFC/EM. La OMF está financiando dos nuevos tratamientos piloto experimentales, Mestinon y Kynurenine, y un estudio para realizar un seguimiento de los pacientes de la UCI con COVID-19, pensando en que algunos puedan desarrollar SFC/EM. 

Necesitamos su apoyo en 2020 para redoblar nuestros esfuerzos y aumentar el impulso de la investigación que se está llevando a cabo en nuestros cuatro Centros de Investigación Cooperativa.»

Desde 2012, la OMF ha recaudado más de 24 millones de USD para la investigación del SFC/EM procedentes de donaciones privadas grandes y pequeñas, lo que nos convierte en el mayor fondo privado de investigación del SFC/EM del mundo. Sin embargo, para la investigación médica, esto es una gota en el mar.

Tenemos un largo camino por delante para solucionar el desequilibrio de la financiación e impulsar extensamente la investigación. Para llevar a cabo las investigaciones amplias y profundizadas necesarias para encontrar tratamientos y una cura, hacen falta visionarios, como las mentes brillantes que dirigen los Centros de Investigación Cooperativa y nuestros extraordinarios miembros del Consejo consultivo científico, así como una inversión significativa y sostenida por parte de promotores como usted.

Hay muchas formas de ayudar y le hemos facilitado las cosas para que pueda realizar una donación y pueda unirse a las miles de personas de todo el mundo que ya forman parte del equipo de la OMF. Los retos son reales, pero no perderemos la fuerza. No con usted en nuestro equipo.

Que todos sigan teniendo esperanza,

 

 

 

 

Linda Tannenbaum
Fundadora y directora general/presidenta

P.D.: Tengo una petición especial durante nuestra campaña #MayMomentum: si aún no lo ha hecho, considere la posibilidad de hacerse donante permanente. Su contribución mensual tendrá un impacto excepcional, ya que supone una fuente segura de financiación para nuestros investigadores.

Haga clic aquí para realizar su donación mensual.

#MayMomentum

 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo