Thursday, November 24, 2011

Sight for Sore Eyes

Good news w/out a definite reason. Over the last month or so, my vision's improved. I did need reading glasses to read the newspaper or books, etc., period. Now, in decent light, I've been reading the paper, doing the crossword, reading books, etc. w/out glasses. Yet, my MRI shows the disease is stable. Seems like the growth would've eased up on  my optic nerves for this to occur. I'm not arguing! But, I am curious.

Monday, November 14, 2011

DONATIONS & GIFT MATCHING

Dear Friend:
This is a wonderful time of year with Thanksgiving and the holiday season just around the corner. The ECD Global Alliance volunteer Board of Directors joins me in saying “Thank You” for your generous contributions and support. Your gifts are making a difference:
 Patient representatives come from 16 countries. We represent the largest group of ECD patients known to exist and allow patients and family members to connect with each other to share their experiences.
 The National Institutes of Health (NIH) has begun a natural history study on Erdheim-Chester Disease to understand the disease and its cause.
 The ECD Global Alliance web site provides information to help physicians, patients and families, including links to descriptions of all known ECD research underway.
 A $50,000 ECD research grant has been funded by the organization to better define the pro-inflammatory microenvironment inside ECD lesions.
 A new $50,000 ECD research grant will be funded in 2012.
 In 2012, research, advocacy and education are the priorities and your contribution and support will make a difference.
This holiday season please make a gift contribution to ECD Global Alliance and consider asking your family and friends to make similar gift contributions. You can make your tax-deductible donation online at www.razoo.com/story/ECD-Global-Alliance or mail your check to:
ECD Global Alliance P.O. Box 775 DeRidder Louisiana 70634
YOUR GIFT WILL BE MATCHED! Thanks to a generous private donation, contributions up to $50,000 will be matched until January 1, 2012. If you donate $50, the Global Alliance will receive $100 thanks to your donation and the matching donation. Please share this giving opportunity with your family & friends. It is a great holiday gift.
Supporting research is crucial to our mission. Your gift funds additional research projects and provides for the ECD Global Alliance to act as the communication conduit between researchers, patients and their families. Thank you for your generous gift.

NIH ECD Study

It is official. I've been accepted into the NIH study, and we'll fly out 1/15/12. The poking & prodding will begin Monday morning. I'll be getting bone scans, PET scans, CT scans, blood work, a stress test and even see a physical therapist for advice about exercises to improve my balance. That's just a taste of where they're going to take a peak. We're really excited and plan to also make a mini-moon out of a couple of the days. The Dr. has warned me that come Fri., I will be very tired. I'll get over it for time w/ my bride, though.