Lilly knows that her 8-year-old cousin, Isabella, has a very bad disease that her head is very fragile and she can’t walk very well. She knows that her family is doing everything they can so Prof. Orna Elroy-Stein can make a “pill” for her. What Lilly does not know is that without the “pill,” her disease is terminal.
Isabella was diagnosed with leukodystrophy known as vanishing white matter disease (VWM) in 2009. It’s a rare condition that will cause her to lose her speech, her ability to walk, and eventually, it will take her life.
But, it doesn’t have to, Prof. Orna Elroy-Stein from Tel Aviv University is working on a drug therapy to stop the progression of VWM. Prof. Orna Elroy-Stein’s VWM research could save Isabella, as well as other children affected by VWM. It will cost $ 600,000 to fund that research.
Since last year, VWM families from around the globe joined Isabella’s family to support Prof. Orna Elroy-Stein VWM research and so far… all together, including the “Find a Cure for VWM” fundraiser lunch they had donated close to $200,000. It’s an amazing start, and the family is very grateful to all who have donated. They still have a ways to go.
Now, 6-year-old Lilly is asking for more contributions and she’s saving her pennies. “We really need you to help us get my cousin the “pill” quickly.”
Please join Lilly’s Mission to Find a Cure for VWM – save your pennies and make a donation via check to AFTAU:
9715 Woods Drive, #1608
Skokie, IL 60077
Attn: Rick Kruger/Orna VWM research
or online: https://www.crowdrise.com/findacureforvwm.