Saturday, December 22, 2007

THE MAGIC NUMBER IS ***201***

I can't believe it! 201 books collected to date! I haven't even had a chance to get to all the drop locations yet. This is so exciting.

The "Big Thank You" goes out to (of course) Corbett School. I believe that they filled the donation box within the first few weeks of the drive. Another thank ou goes to a special donor from Corbett school who donated an entire box of about 40+ books. Books also came in from family and friends of Nina and some of the playgroup moms.

This coming week (after the holidays) I am going to check out the other drop locations and tally up again in the new year. I am so pleased and proud we are making headway to our goal of 500 books.

Another hopeful piece of news I want to share is that we might get some press about our little project. The holidays are filled with so many charitable events... it's hard to keep track of where you want to give. Everyday I read a different story about someone in need and how that need was filled.

The Fanconi Anemia Research Fund (FARF) is what I would consider a unique program. I think the reason why is because it doesn't focus on one specific field of a disease (i.e. research or education) it encompasses so many parts of how a disease affects a patient and their family.

Rachel (Nina's mom) did a nice little blip on her personal blog that I would like to share with you about FARF. It might explain a few things for you about our friend Nina.

"FARF is the Fanconi Anemia Research Fund. Without them it is very unlikely that we would have known that Nina had FA, and even if we had, there wouldn’t be much to know about it, or any support for FA families.

The Fund was started by another Oregon couple, Dave and Lynn Frohnmeyer, who have 5 kids, three of whom have FA, with only one of those three surviving. In a very short time they have used the Fund to support groundbreaking research into a very rare disease that would not have otherwise received this support.

So far 13 FA genes have been identified, and there are more to come. FA research has improved outcomes for bone marrow transplants for FA patients and for other patients needing transplant. It has also lead to the discovery that one of the FA genes is the same as one of the breast cancer susceptibility gene. FA research has the potential to benefit everyone who is touched by cancer, and these days it seems like everyone knows someone with cancer, or has had it themselves. An unusually high number of researchers who received their initial funding from FARF have gone on to receive support from the National Cancer Institute and National Science Foundation.

FARF also provides tremendous support for the families who are affected by FA. They have published handbooks for both the families and their doctors, and provide them free to both. They have phone support, which is so helpful right after diagnosis. And they have an online group for parents to support each other over the long haul. They convene and annual meeting for families at Camp Sunshine, with non-stop fun for the kids, and non-stop lectures by leading FA researchers and doctors for the parents. They also organize regular scientific symposium to encourage further research and communication between researchers.

(THIS IS THE MOST IMPORTANT PIECE OF INFORMATION...) Furthermore, an unusually high percentage of money donated to FARF (roughly 90%) actually goes to their programs instead of to administrative costs or fund raising costs. There are very few charities that are this fiscally responsible.

I’m sharing this with you because, obviously, FARF means a huge amount to us. And I want to encourage you to consider donating to them before the end of the year (or, of course, any time! But many of us make charitable donations this time of year….)"

Thanks Rachel for clearly spelling this out for me! I know I would not have even come close to spelling out the realities of FARF. Stay tuned to see what the new year will bring for our Books of Love.

Happy Holidays!

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