April 3, 2013

Let’s Help Jeff Leibow Get Support for NF Research in the Federal Budget! Please Write Letters to Congress by 4/12!

April 3rd, 2013

Jeff Leibow 2000
Jeff Leibow (Photo Credit: Walter McBride, BroadwayWorld.com)

To All Jersey Boys Blog Readers,
We have an incredible opportunity to help JERSEY BOYS Las Vegas cast member Jeff Leibow with a very important project: to get support for Neurofibromatosis research in the federal budget!

By writing letters to elected officials, we can assist Jeff with in his goal of raising awareness and federal funding for NF research for the 100,000+ persons (including Jeff’s daughter Emma) who are currently living with this disorder.

Please read Jeff’s letter to JB fans below & let’s help him reach his goal! His deadline is Friday, 4/12/13!

Dear Jersey Boys Bloggers:
As many of you know, my daughter, Emma, was born with a neurological disorder called Neurofibromatosis (NF). In simplest terms, she was born with a mutation on a gene that normally suppresses tumor growth. This means that tumors, called neurofibromas, can grow anywhere there is a nerve, at any time, without warning. Because the JB Bloggers have always been so supportive, I am asking for your support for a massive letter writing campaign currently under way in the NF community.

Every year I (and hopefully next year so will my wife and daughter) join the NF Consortium in Washington DC to fight for federal funding for Neurofibromatosis research. I do this for Emma and the 100,000+ living with NF. The meetings in DC are only the first part of the process…

The next step requires you. Now that we have a number congressmen and women on board, we need your help to get the attention of your congressmen and women. Here’s now:

1) Follow this link: https://www.nfnetwork.org/be-an-nf-activist/advocacy-action
2) Edit the letter on the page, if you like, or leave it as is (it may take a few minutes more, but mentioning a personal connection to NF will help)
3) Fill out the rest of the form
4) And send it
5) Then, send this to everyone and anyone you feel comfortable sending this to

This process has raised $230 Million since 1996, and has made a world of difference to those living with NF, but there is still no cure and no treatment, so we still need your help.

Here’s the catch, I was just informed that the cutoff for receiving these letters is this Friday, April 12. So, please if you want to help, don’t put it off. It will only take you 2 minutes.

We thank you. Emma thanks you. And the 100,000+ people living with NF thank you.

Thank you!
Melody and Jeff Leibow

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