[Jewish] You could help save a life--please read

[ellen bernstein]

Dear JSUniks,
 A fabulous Jewish Hampshire alum needs your help to help her daughter who is suffering from a rare genetic disease. The full message from alum Rachel Gratz-Lazarus is posted below.  Rachel is hoping one or more of you can help start a registration drive (next semester) at Hampshire--to register as many students as possible (particularly those of Ashkenazi Jewish descent)  to become bone marrow donors (just take a cheek swab).  If  you have any interest in helping out, Professor Laura Week would love to work with you.

Actually being a donor--if one is a match—is a more involved process—yet one that could save a life. 

Please read Rachel’s full note posted below so you can get the whole story.

This site discusses what is entailed in the drive

https://www.norahneedsyou.com/donate?fbclid=IwAR09ElmlHuD0kORIEpr16njSjAat48cB9FRLmnWtruWHSTzIrG4liuTJGF4 <https://www.norahneedsyou.com/donate?fbclid=IwAR09ElmlHuD0kORIEpr16njSjAat48cB9FRLmnWtruWHSTzIrG4liuTJGF4>

Please be in touch with me if you have any interest in this.

With gratitude,
Ellen




Ok friends, this is really hard, but here goes: 

Last month our 4-year old daughter Norah was diagnosed with a rare genetic disease called Fanconi Anemia (FA). FA, in essence, interferes with the body's ability to properly repair its DNA, and increases sensitivity to radiation. This puts Norah at high risk for a variety of cancers -- the greatest risk in the coming years being leukemia. If untreated, 90% of FA patients develop leukemia and/or bone marrow failure. Currently, the only known treatment to prevent leukemia is a bone marrow transplant.
We are grateful that Norah is currently healthy. She is the same bouncy, imaginative and head-strong little lady she has always been. However, Norah's doctors are preparing us for the need to do a bone marrow transplant in the next few years. Should her situation worsen, she will be in immediate need of a bone marrow donor with an exact match in order to make sure that the procedure is successful.

While finding an exact bone marrow match is difficult, the likelihood of a match increases substantially among ancestral lines, and for Norah this means we are looking primarily for a donor with Jewish Ashkenazi (Eastern European) ancestry.

However, we are also determined to increase the pool of potential bone marrow donors in the registry for all those in need of a transplant (a lack of diverse donors, and mixed-race donors in particular, contributes to health inequities).

Zach and I are launching a campaign to recruit 10,000 people between the ages of 18-44 to join the national bone marrow donor registry to help save our daughter's life and others in need of a transplant. We have created the website www.NorahNeedsYou.com <http://www.norahneedsyou.com/?fbclid=IwAR16LwLhFXlF-qNyj-Y6zlZGHIEr9Jl2cFJQzSE_LHo5M96ouAYHMtjwdpc> to share more and offer options for how to help. Please visit and share!

How can you help? 

1. Register here if you are between 18-44: http://join.bethematch.org/SwabforNorah <https://join.bethematch.org/SwabforNorah?fbclid=IwAR1mBJgkKLLcJVwYPLf1hQKnsmXCixO1_dPSdH0Jmm3zylr8RW-Nwg3NFpU>. Registering is an easy process that involves completing a quick 6-minute online form and doing a simple painless cheek swab a few days later when the swab kit arrives at your home. If a person is found to be a match, and willing/able to donate, the donor procedure is very low-risk (contrary to common perceptions) and the benefits are literally life-saving.

2. Like & Share the Norah Needs You FB Page: www.facebook.com/NorahNeedsYou <https://www.facebook.com/NorahNeedsYou>and encourage others to register

3. Email your network and encourage at least 10 people in your community to register (sample email on website: https://www.norahneedsyou.com/sample-email <https://www.norahneedsyou.com/sample-email?fbclid=IwAR1BBDsDv9hhOsLxRVb_AtKAoj2nBlHxPmPBGYwFTe_i2kdbXegxaODf9Ec>)

4. Host a drive (visit our website to learn how: https://www.norahneedsyou.com/donate <https://www.norahneedsyou.com/donate?fbclid=IwAR09ElmlHuD0kORIEpr16njSjAat48cB9FRLmnWtruWHSTzIrG4liuTJGF4> )

5. Donate to the Fanconi Anemia Research Fund to help find a cure: https://fundraise.fanconi.org/give/160689/… <https://fundraise.fanconi.org/give/160689/?fbclid=IwAR3iAz_gSAQ1s4f9_6OYJFGcZvAhNC2pnuMCgRnhs0OZahG9hVpo6hcYy4Y#!/donation/checkout>
We love Norah with all of our hearts. She’s our tap dancer. Our joke teller. Our goofy bookworm. And, as you can imagine, we are holding a lot right now. We are heartbroken, we are scared. We are also hopeful and determined to make this okay. We are grateful for your love and support of our family - it means the world to us. 

____________________________________

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