Orphan diseases ALS

AvichaiKremer

Why Orphan Diseases Should Be a Jewish Priority (Guest Author: Avichai Kremer of Prize4Life)

When I first learned about Prize4Life, I was unsure if ALS (also known as Lou Gehrig’s disease) was a Jewish issue. But now I am convinced. Read more to find out why.

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“ALS can affect anyone without differences in gender, race, geographical location or religious belief. But while it destroys the lives of tens of thousands families every year, modern science cannot offer even a single solution to this deadly disorder. Why? Because the measures our society put in place to cure diseases fail when there is not enough economic profit to be made from treating these diseases.”

In This Post, You Will Read

  • Avichai Kremer on “ALS and Jewish Philanthropy, ” why orphan diseases should be a Jewish priority
  • What Prize4Life and Dollar4Life are doing to promote awareness of ALS and encourage research for the cure
  • Who is Avi Kremer and why he is an ALS activist
  • Your role in finding a cure for ALS

ALS and Jewish Philanthropy by Avichai Kremer

The Jewish term “Tikun Olam” means “Mending the World.” Inspired by that concept, 80% of Jewish Philanthropy goes to non-Jewish causes. Indeed, there are many problems in this world and many challenges worth mending, so where should we focus our efforts? I wanted to offer one possible answer where Jewish Philanthropy, while not benefiting Jewish causes per se, still follows Jewish guidelines: orphan diseases.

What is an Orphan Disease?

Orphan diseases are exactly as their name suggests – a group of diseases that have no “mother” or “father” to take care of them. When a disease hits a population that is too small to be economically attractive to develop a treatment for it, that disease is considered orphan.

In the US that threshold is a disease that affects 200, 000 Americans. The obvious type of such a disease is a disorder that is so rare that it is considered orphan. The less obvious type of orphan diseases is diseases that are so deadly, so fatal, that the patients die too fast to accumulate a big enough market for drug companies. Such is ALS (also known as Lou Gehrig’s Disease in the US and MND in the UK).

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