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

 

AvichaiKremer

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

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).

Note

Special thanks to Amy Yamner for her persistence and grace.

 

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

  1. […] Avichai Kremer, Founder and CEO of Prize4Life.org writes about why Lou Gherig’s and other &#82… […]

  2. Hendrik Ernst says:

    Being concerned by a rare neurological disease myself, I really appreciate it, that there is a forum about “orphan’s” diseases here.

    I’m a West German, having suffered of sleep sickness (ICD-10: G 47.4) for about 11 years now. The statistical probability of this disease only is 0.03 % of the total German population (this means: not more than 30 000 persons on our 80 millions of inhabitants). And only 10 % of all sleep sickness cases are due to a genetic defect on chromosome 6, like mine one.

    Experts currently estimate, that only 10 % of all sleep sickness cases in Germany are diagnosed correctly and treated by the corresponding medicaments available in our country. But even in those few cases of recognizing the disease, I usually took several years, until correct diagnostics was made.

    So, many sleep sickness victims in FRG suffer an endless odyssee through medical cabinets and hospitals of different fields of medicine, until the real cause for their suffering is discovered.

    During medical treatment of sleep sickness itself meanwhile has been analyzed (e. g. succes / failure in case of using certain medicaments, doses necessary, etc.), it’s really difficult, if a patient also is suffering of other chronic diseases

    The total number of those persons in FRG is without any doubts much lower, than the one of all victims of the disease.

    Any sleep sickness patient, also having other chronic diseases, is practically a very particular case of his / her own, according to the other diseases concerned.

    This means, that combining of completlx different medicaments, necessary to treat such patienrts, hardly has been studied here. Like this, it’s really a problem, to exclude side-effects by interactions of medicaments.

  3. thenewjew says:

    Thank you for sharing this information, Hendrik. I wasn’t aware of that information about sleep sickness before and am sorry to hear it.

    I don’t know much about research and development of diseases in Germany, but wonder if such a disease affects a greater number of the European population, might other countries scientists be working on it or is the number still too small?

    I wasn’t able to reach you by e-mail– they kept bouncing back– but wanted to show you this entry and make sure I had your permission to use your letter. I know it is after the fact, but I will remove it if it bothers you.

    As I said before, I very much appreciated your words and wanted others to hear your perspective. I didn’t include your name because I couldn’t reach you for your permission at the time. if I have your okay to include it, please let me know.
    Link: https://thenewjew.wordpress.com/2007/11/11/remembering-kristallnacht-words-from-germany/

  4. thenewjew says:

    Dear Hendrik,

    All my e-mails are bouncing. They return with the message that your mail doesn’t accept e-mails from that destination (my e-mail account).

    Do you have an alternate address where I can respond to you? Please let me know.

    Maya

  5. […] “Why Orphan Diseases Should be a Jewish Priority (Guest Author Avichai Kremer of Prize4Life)&#… […]

  6. […] Why Orphan Diseases Should Be a Jewish Priority (Avichai Kremer of Prize4Life on ALS/Lou Gehrig’s Disease)y […]

  7. […] Avichai Kremer, founder of Prize4Life and Dollar4Life, organizations that work to combat ALS disease, writes on “Why Orphan Diseases Should Be a Jewish Priority” […]

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