Janet & Andrew's House 1234 Main St Anywhere, WY 12345 US
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When:
Monday, October 1, 10:30AM
Phone:
123-456-7890
Dear Friends,
As many of you know, December 23, 2005 was a day that drastically impacted the rest of our life. That day, when Rachel was not even 3 months old, the doctors at Children's Hospital told us that Rachel has multiple hemangiomas on her brain and "IT DOES NOT LOOK GOOD." Those words will be hard to forget. We were told that Rachel has a very uncommon medical condition called PHACES. After a few more doctors reviewed Rachel's MRI the next day, we were told there are no hemangiomas on her brain, but many in other places in her skull and little body.
We have been so fortunate that her treatment is now in maintenance mode although we still go for regular visits to a team of doctors including a hemotologist, ENT, ophthalmologist, neurologist, pediatrician, plastic surgeon, and neurosurgeon.
Worldwide less than 500 people have been diagnosed though we suspect the numbers are higher. From the beginning of this journey we have been huge advocates of sharing all we can so that the medical community can figure out what causes this association of physiological abnormalities. We have enrolled Rachel in medical research efforts to help them find some answers. Much research is being conducted about PHACES but nothing is definitively known and researchers and doctors continue to use what limited resources they have to understand why PHACES occurs.
NOVA is one of very few organizations that is working to learn more about PHACES and help families who have children who are being diagnosed with this. For more information, check out the website link below and click on "Resources".
We are committed, along with several other families throughout the US and Canada, to raise $15,000 to help develop the first ever PHACES conference at Texas Children's Hospital in November 2008 for families and medical professionals. Additional funds raised will be used to sponsor further medical research about PHACES.
We are suggesting donations of $25 per person or $50 per family. Kids are definitely welcome! Please join us for a wonderful brunch to celebrate friends, good times, and (hopefully) great fall weather. And most important of all, please help us celebrate the life of our daughter Rachel and the contribution she is going to make to PHACES and the world.
If you are unable to join us please consider sending us a donation made payable to NOVA at 1234 Main Street, Anytown, USA, 12345.
Thank you for your generosity. Janet, Andrew, & Rachel
PS: If you are interested in helping us raise funds and need an excuse for a party, please let us know. Visit http://www.phaces.org for more information.
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