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.
Here is a preview.
“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).
Every year ALS affects the same number of new patients as Multiple Sclerosis (MS), but while MS patients live with the disease for decades, ALS patients die within 3-5 years on average (there are very few patients that beat this deadly statistics although physicist Stephen Hawking has been living with ALS for 40 years now). As a result, MS isn’t considered an orphan disease and indeed drug companies have developed a few effective treatments for it, but ALS patients die too fast and so ALS is orphan disease and there are no effective treatments for patients.
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.
Seven years into the 21st Century doctors tell ALS patients what they told Lou Gehrig 70 years ago: that the cause of ALS is unknown but it is non-contagious and cruel — the body is destroyed, but the mind remains intact. And that they cannot help.
The Role of Jewish Philanthropy
But what does ALS has to do with the role of Jewish Philanthropy? I want to share with you something Israeli President Shimon Peres said when he spoke at an ALS research fundraiser in Israel this June.
He said: “When you come to support medical research, you can choose to be democratic about it – see what disease kills the most people and focus on it first. However you can choose to be Jewish about it – the Torah teaches us that ‘whoever saves a single soul it is as if he saved an entire world’. And on this matter,” Peres concluded, “I choose to be a 100% Jewish.”
I too believe that Jewish Philanthropy should focus on the orphans of the world, like helping people with ALS get the treatment they deserve. If we don’t support researchers to come up with ALS treatments, no one will. Certainly not the for-profit sector. That is exactly where Philanthropy can make the most difference. That is exactly where Jewish Philanthropy should step in and save the world, even by saving one soul.
The Mission: Dollar4Life and Prize4Life
Dollar4Life is a campaign started by Prize4Life, an organization using prizes as incentives for ALS breakthroughs, that believes that if everyone gives just one dollar, we can save many more than just one soul. Through this unique campaign to reach one million people and raise one million dollars, Prize4Life is also drawing on the Jewish concept of a mitzvah.
The importance is the act of giving, and not the amount. Dollar4life asks each donor to give one dollar and then to give again by asking their friends to do the same. With one million people giving one million dollars, we can begin to mend the world together.
About Avichai Kremer
Avichai (Avi) Kremer was diagnosed with ALS in 2004 while a student at Harvard Business School. As CEO of IsrALS and Prize4Life (as well as its co-founder), Kremer has raised over $5 million in the fight for the cure.
Israeli by birth, Kremer is a graduate of the Technion- Israel Institute of Technology where he earned a bachelors degree in computer science. He was also a captain in the Israel Defense Forces.
Harvard Business School recognized Kremer with its prestigious Dean’s Award for an outstanding contribution to the university and to society.
How You Can Get Involved
- Educate yourself and your friends on orphan diseases like ALS– Prize4Life’s website is a great place to get started with the basics
- Encourage research on ALS by supporting scientific research for ALS biomarkers. Start by learning about Prize4Life’s contest in which $1 million will be awarded to the scientist or scientific team to discover the first ALS biomarker.
- Donate that dollar— and then keep giving (you can also donate through Facebook’s “Causes” application)
- Volunteer your time by raising awareness or through fundraising efforts– Prize4Life tells you how
Prize4Life and Dollar4Life are 501(c)(3) charitable organizations. All donations are tax deductible (tax ID/EIN: 20-5055664).
In Israel, please contact IsrALS to learn more about getting involved (website is available in Hebrew and English).
Special thanks to Amy Yamner for her persistence and grace.