See the note below from Geneva on the occasion of her 50th birthday. This is a special birthday for reasons explained below. She is one of the longest-lived people who has suffered from the rare blood disorder, Idiopathic Neutropenia. Most victims of this disease die before age 35. An important goal of the Geneva Institute is to help fund the research that will help to find a cure for this rare orphan disease.
The Ella Jewell Foundation was created to support the doctors searching for a cure for neutropenia, the disease that Geneva has suffered with since she was a young woman. The more prevalent cancers tend to receive the major funding. The Ella Jewell Foundation is fundraising for a cure for this rare disease that has baffled researchers. If you would like to help, please mail your tax deductible donation to P.O. Box 396, Bethel, CT 0680. (www.ellajewellfoundation.com.)
A note from Geneva:
Dear Friends,
I want to share a little bit about why my 50th Birthday is so special to me! When I was 21, I was diagnosed with Chronic Cyclic Idiopathic Neutropenia, a very rare blood disorder. I was told that I probably wouldn’t make it past 25 years old. This diagnosis changed the way that I looked at life. I never took it for granted again, and whenever there was something I wanted to do, I didn’t wait for a better day.
I didn’t procrastinate! Life’s too short not to take advantage of God’s earth. None of us know how long we have on this planet, so we must take every advantage that God gives us . We can see how much sand has fallen to the bottom of our hour glass, but we can’t see what remains at the top, because God has His hands around it.
In the beginning, there wasn’t a cure and no treatment was available, so all we could do was treat the infections the best we could and pray that I wouldn’t come down with pneumonia because that was the killer.
When I turned 24, I enrolled in a blind study to test a drug that normally was used for people undergoing chemo. Our doctor wanted to prove to the FDA that this drug would help anyone who had an Autoimmune Disease. Three weeks after starting the study, I came down with the dreaded pneumonia and almost died. In fact, my doctor cheated and checked to see if I was getting the real drug and not the placebo, and because I was getting the real drug, I survived. From that day forward, I survived for 23 more years. But the last 3 years, I have once again started experiencing lots of infections and the doctors fear that the drug is no longer effective, and we need to find a cure or another type of treatment so that I can, once again, experience a more normal life.
So in lieu of gifts, I am requesting that, if you feel called, you would send a donation to the Ella Jewell Foundation. (www.ellajewellfoundation.com or send a check to The Ella Jewell Foundation, P.O. Box 396, Bethel, CT 06801) This foundation was created to support the doctors searching for a cure for neutropenia. The more prevalent cancers tend to receive the major funding, but not this rare orphan disease.
The doctors have spent over 40 years trying to find a cure. They have learned much information about this disease which has helped us, but so much more is needed. Tax deductible donations to The Ella Jewell Foundation will go directly to the research clinic to help researchers to find a cure, or another type of treatment, that would continue to save and enhance the lives of neutropenics.
Thank you,
Geneva Lee Blumenthal