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Hello again, This is Eliza’s father Glenn, director of Cure Sanfilippo Foundation. It’s been a while, and I want to be upfront: I’m asking for something in this letter. I’m asking if you would again support our cause by donating $40 to our Foundation this year for our Annual Birthday Drive running between November 1st and the 16th (Eliza’s 6th Birthday), at
www.SavingEliza.com. I know what you might be asking: “Wait, didn’t we do this
last year? You hit your goal and we have a happy ending, right?” Well,
the short answer is “No” … but more specifically “Not Yet.” What that
funding last year did was help fund a planned Gene Therapy clinical trial
treatment and
hopeful cure, now on the cusp of being tested in children thanks to generous donors like you. Along the way, we’ve learned that funding is critical to move things faster, but the process and the “Science” still take time. When it comes to a degenerative disease like Sanfilippo Syndrome, it can never come soon enough for the children and families, but there are brilliant teams working on this clinical trial, which is now expected to start in just a couple of months, thanks to you! Eliza will be 6 years old. We can’t believe it. She is hanging on, but we know she is on the “wrong side” of this disease. She’s
still saying some words, still smiling, still laughing. It is apparent though that the disease continues its damage in her … but we are so close now. Do we give up? Do we say “we’ve done enough”? Never. It has become our PASSION to help stop this disease,
not just for today’s children, but for generations to come. So why am I coming to you for help? Because we consider YOU to be one of our core supporters, who have allowed our Foundation to fund this urgent research and spread this amazing awareness. Please take a look at the bottom of this email where we outline just some of the progress and difference our Foundation is making for so many children.
You can be assured your funding is going to the most promising research as we continue to run on only volunteers—from our talented Board, to brilliant Scientific Advisors. This allows all net dollars to go directly to the research for a cure
(as a non-profit, we take great pride in this). Sanfilippo Syndrome is relentless. For those of you with children, think about when your child gets injured, sick, or even just their feelings hurt; it’s hard on a parent to see the little one you love go through something, however small. That uncomfortable feeling you get inside, but most times you know your child will bounce back and be okay. We live seeing that hurt in Eliza every single day, and it’s not going away. It affects us as parents to the very core, and while we put on a
brave face, the truth is that we ourselves are barely hanging on. Eliza’s big brother tells us he “misses” his little sister, and he’s only 8—we don’t want any family or child to have to live what we are and others have lived through. We still have the utmost hope for Eliza, as do so many other families for their children. Our request to you, is will you please help us move even faster towards proven effective treatments or even a cure for Sanfilippo children! This will be our only Annual Foundation online campaign. We are hoping to reach our
annual goal for research between November 1st thru November 16th (Eliza’s 6th Birthday).
We would need 5,000 supporters donating $40 to raise the final $200,000 this year, although every single dollar is crucial. We hope you will be one, so please we kindly ask you act today. We need you; the children need you. There are 3 ways to contribute your tax deductible donation: www.SavingEliza.com,
www.CureSFF.org, or by sending a check made out to Cure Sanfilippo Foundation, PO Box 6901 Columbia, SC 29260. Our humble and deepest thanks from all Sanfilippo families, Glenn & The O'Neill Family
On Nov 16th, Eliza turns 6, and we #WishUponACure Follow campaign updates on Facebook www.facebook.com/ElizaOStory
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