Dooms Day - November 1st
November 18, 2016
Reed, a three-year-old from Jesup, Iowa started his fight to find a cure for VWM on November 1, 2014. Reed was born on December 3, 2012, a normal pregnancy, a normal birth, a normal baby, a normal toddler, and then, on November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. He was falling a lot and whining, not crying, but frustrated. The family continued to watch him struggle and noticed his right foot turning in. After no clear answers as to why this was happening, Jesse, Erika and Reed headed for Iowa City to see a neurologist.
On February 25, 2015, Reed was diagnosed with Leukodystrophy and then Vanishing White Matter.
Leukodystrophy known as Vanishing White Matter Disease (VWM) is a degeneration of the brain. Currently there is no cure for VWM. We are in race against time to Find a Cure for VWM! Time is not on our side; most children born with this genetic disease die at an early age. Research efforts are greatly underfunded and there is little awareness.
Let's work together to change this.
Stay up to date with Reed atwww.teamreedcrosby.blogspot.com
Can you please help us Find a Cure for VWM ?
Donate to Prof. Orna Elroy-Stein VWM research
via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research
"Approximately 50% of the people affected by rare diseases are children ~
30% of children with rare disease will not live to see their 5th birthday"
What is VWM ?
Vanishing White Matter Disease (VWM) is a rare and degenerative brain disease belonging to a group of conditions called the Leukodystrophies. VWM Disease causes the deterioration of the central nervous systems' white matter. There is currently no cure or treatment for this awful illness. As VWM is so rare, there is minimal funding available to continue researching a cure. The average life expectancy of VWM patients is 5-10 years from onset of the disease.
While there is research currently being conducted, there are no treatment options available for VWM disease. Prof. Orna Elroy-Stein from Tel-Aviv University is one of the few researchers in the world studying VWM disease. She is focused on research surrounding VWM disease and finding a cure for VWM. The process of finding a cure is very tedious and expensive, and consists of several phases. Scientific research is like putting together a huge jigsaw puzzle. It takes months and sometimes years. Currently however, there is no major funding dedicated to VWM research. Without funding there is no hope for a cure, which is why we’ve decided to stop waiting for an answer and put matters into our own hands. We can’t be a scientist finding a cure, so this is what we have to do, raise the money to fund the science. It’s what we all have to do. We don’t have a choice! We’re doing this not just for our son, but for all kids with VWM. We’re at war with this disease.
My dream is that science and research makes VWM a condition people can live with. I want everyone with VWM to have the ability to live a full, meaningful life. That would be a gift!
They say " money can't buy you happiness" but when it comes to research money can help Prof. Orna Elroy-Stein to Find a Cure for VWM ! ....~ "The more money is restricted to VWM research.... the more projects researchers can run. Money allocated to VWM will keep Prof. Orna Elory-Stein working towards finding a cure and it will minimize her stress to find research funding. Prof. Orna Elroy-Stein is determine to find a cure for VWM and donations, through the American Friends of Tel Aviv University (AFTAU), are vital to ensuring VWM research can continue. This is because grants do not cover the full costs of research, especially the purchase of equipment vital to VWM research.
Thank you for reading this post, spreading Leukodystrophy awareness ad being a citizen scientist !
Without your support Prof. Orna Elroy-Stein and her team would not be able to do their work. Every gift makes a difference. Thank you!
Funds + Research = Find a Cure for VWM = HOPE!