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

Vi presentiamo Laurel Crosby, PhD, membro del Team dell’SGTC

In questo Mercoledì della Scienza della OMF (#OMFScienceWednesday) siamo lieti di presentarvi Laurel Crosby, PhD, che è stata il primo membro dello Stanford Genome Technology Center (SGTC) a unirsi al dott. Ron Davis nella sua ricerca per capire la base molecolare della ME / CFS. Laurel ha condiviso la sua storia con la OMF.

Laurel Crosby, PhD, member of the SGTC Team

“Mi chiamo Laurel Crosby, Ph.D, e sono una Associata di Ricerca in Ingegneria allo Stanford Genome Technology Center. Il mio background è in biologia, ecologia microbica, ingegneria ambientale, e sviluppo di tecnologia diagnostica molecolare.

Ho aiutato Ron Davis a costruire i componenti di laboratorio del Centro di Ricerca sulla CFS a Stanford, e il mio titolo ufficiale è Direttrice dell’Innovazione. Passo metà del mio tempo a pensare da scienziata, alla ricerca di indizi, a rovistare in cerca di nuove tecnologie, e a identificare modi per migliorare la qualità della vita per i pazienti e le loro famiglie.  

Sono focalizzata sulla reciproca interazione fra genetica e ambiente, soprattutto su nutrizione, il microbioma, ed esposizione ambientale.  La mia formazione in ingegneria mi dà la capacità di guardare alla salute come a un sistema di interazioni, e mi focalizzo sulla metabolomica e sulla genetica come parte della componente Multi-Omica del nostro programma di ricerca.

Al momento sto anche lavorando su strategie per valutare l’esposizione a metalli pesanti, e più precisamente su modi per misurare tracce di metalli essenziali nelle cellule e nei tessuti.

Il resto del mio tempo lo dedico a fare “l’aggiustatrice”. Mi assicuro che le cosa procedano in modo liscio e senza intoppi, e sostengo il resto del team di ricerca sulla ME / CFS allo SGTC.

Per esempio, quando eravamo affamati di campioni di pazienti, ho scritto alla IRB (Independent Review Board – Commissione di Revisione Indipendente) e ho organizzato i servizi di flebotomia. Quando ho scoperto una nuova promettente tecnologia, ho negoziato con le compagnie per fornire dimostrazioni dell’attrezzatura e un prezzo favorevole.

Proprio ora, sto lavorando per fornire a medici e pazienti l’accesso ai nostri servizi e strumenti di medicina di precisione. Cerco sempre di trovare un modo per far funzionare le cose e renderle meno costose. 

Nel 2012, Ron ed io eravamo le sole persone allo Stanford Genome Technology Center interessate a studiare la ME / CFS, e ora siamo un movimentato centro con più di una dozzina di ricercatori, diversi entusiasmanti progetti, e molte collaborazioni domestiche e internazionali”.

Grazie, Laurel, per il tuo incrollabile e coraggioso impegno di lunga data nel nostro obiettivo di aiutare i pazienti a tornare pienamente alla propria vita. #EndMECFS

Potete trovare questo pezzo anche sul nostro sito web: http://bit.ly/2vIAG7D

La OMF ringrazia Giada Da Ros per  la traduzione.

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