My inspiration. My words.
It seems that every day, I hear from patients and families who are anxious, uncertain, fearful, apprehensive, and confused with respect to information about COVID-19 and related disorders. Government representatives, public health officials, scientists, clinicians, and the media do not offer consistent explanations of this devastating pandemic.
For us, at the Jeffrey Modell Foundation, it is especially troubling for patients with Primary or Genetic Immunodeficiencies, who are among the most vulnerable population given their weakened immune systems. We are passionate about these patients and their families, and their continuing exposure, risk, and uncertainty is simply unacceptable. All of us need answers and we need them now!
In short, “You Gotta Know!”…
· Why is my child or family member sick too often?
· Do you agree that “Kids Get Sick” is not a diagnosis?
· Is Primary Immunodeficiency (PI) contagious?
· Do you accept the fact that 70-90% of PI patients are still undiagnosed?
· Are there Warning Signs of PI?
· Are there educational materials readily available?
· Are there tests for PI that are specific, sensitive, and results can be reported quickly?
· Are there treatments that can provide an immune response?
· Are the treatments safe and effective supported by randomized placebo controlled clinical trials?
· Can gene sequencing clarify the condition?
· Is gene sequencing generally available at little or no cost?
· Where are the Centers worldwide that specialize in diagnosis and treatment of these conditions?
And these are just a few that immediately come to my mind…we urge you to…
Ask Questions!
Fight For Answers!
Don’t Accept Delays!
Persist and Persevere Until You Reach The Facts!
To learn more about the Jeffrey Modell Foundation, visit info4pi.org
Our Mission is to Test, Diagnose, Treat, and Sequence
through
Hope, Advocacy and Action!
Our inspiration is our patients…
Let’s do it together…
And stay tuned as we try and help answer some of these questions…because “You Gotta Know!”
In my words,