To All Concerned:
I pray that this message finds you and finds you well. I am writing you on behalf of those suffering from motor neurological diseases. Of the gravest concern is amyotrophic lateral sclerosis (ALS).
ALS has been known to science for over 150 years. Tens of thousands of people suffer from this horrible disease and there are an estimated 15 new cases every single day.
ALS can strike at any age, even children as young as 6 years old. It also effects every race and every gender and most critically ALS is 100% fatal often within a few short years of diagnosis. Victims of this disease quickly lose the ability to move, eat, talk and even breathe on their own.
ALS is grossly underfunded in terms of research and support. National Institute of Health (NIH) only previsions $75 million per year towards research. Compare that to the $34.8 billion ($3 billion from NIH) that goes towards HIV. Although ALS is rarer than HIV in terms of prevalence it has about the same annual mortality. A person with HIV can live well into their 80’s with treatment. A person with ALS lives on average 5 years post diagnosis and there is no treatment.
Please take a moment to think about that. HIV a disease that is highly preventable and very treatable still gets $34.8 billion a year in federal support versus $75 million for a disease that is as deadly and can strike without warning or known cause.
If children getting ALS does not prompt action, then perhaps this will. Studies funded by the Department of Defense, Department of Veterans Affairs, and National Institutes of Health have found that our heroes who have served in the military are approximately twice as likely to die from ALS as those in the general population.
I am asking for just a few simple things.
- Emergency funding of $1 billion to jump-start research.
- Annual research funding of $1 Billion or more per year for this and related motor neuron diseases.
- Fast-track trials on possible treatments that are in the pipeline.
- Advocate relentlessly for those can't. Stand up for those who can't. Speak for those who can't.
After 150 years, these people need something to give them hope and most do not have years to wait for it. May God bless you and the work you do as well as the work of the researchers.