All funds go toward the mission of our non-profit 501c3 Cure Sanfilippo Foundation (Tax ID: 46-4322131), which is to advocate for and fund research directed toward a cure or treatment options for children with Sanfilippo Syndrome. Donations are tax deductible.
It all started back in 2014, with this 3 minute video:
Now, we truly believe we are witnessing a miracle. What else can explain more than 36,000 people already donating more than $2 million dollars, over the past 2 years, to fund a chance at life for our daughter Eliza and other children. Diagnosed 3 years ago with Sanfilippo Syndrome —a terminal disease sometimes called “Childhood Alzheimer's”— Eliza has now become the first child in the world to have been given this new treatment! The second child has also been treated and in the coming months & through next year, a few handful more children around the world will be part of this groundbreaking gene therapy clinical trial that is already showing promising results.
The WORLD decided to rally around our little girl for this greater cause, and she’s become the face of this disease…a symbol for Sanfilippo parents everywhere not to give up HOPE.
And we’re not giving up on them either.
Many more children are still fighting, and we won’t stop until every last one of them is afforded a chance at life. There are more children that need this treatment than there are available spots in clinical trials, and these precious little ones can’t wait. Given the rapidly degenerative nature of Sanfilippo Syndrome, not receiving a treatment, and soon, is a death sentence. Can you imagine being one of these parents?
Since treatment, we see a new light in Eliza’s eyes— she is connecting with us in a way we thought was gone forever. She is working to regain the skills the disease stripped away in the 6 and half years it tore through her body. She is a fighter! Other Sanfilippo children deserve this chance too. At this stage, funding is one of the only things that will accelerate research to give these children a chance. Money doesn’t make the world go round, but it does bring medical treatments faster to children who are dying.
Our goal is to reach $4M here to help make this happen. Please donate TODAY to give these beautiful Sanfilippo children a rightful chance at life. Please share so the world can hear their collective voices.
Our hearts are forever thankful for giving our daughter Eliza and others a chance at life. We are reminded of one quote from a special supporter that has helped us through the hard days: “Keep the faith, and the faith will keep you”. We believe!
Glenn, Cara, Beckham and Eliza (The O’Neill Family)
Learn more about Sanfilippo Syndrome here www.CureSFF.org/about-sanfilippo
Meet just some of the Sanfilippo families here: www.CureSFF.org/meet-the-families
Paisleigh and the Butler Family
Rowen and the Fernandez Family
Izzy and the Jurado Family
Keira and the Esposito Family
Parker and the Talbert Family
Abby Grace and the Ferguson family
All funds go toward the mission of our non-profit 501c3 Cure Sanfilippo Foundation (Tax ID: 46-4322131), which is to advocate for and fund research directed toward a cure or treatment options for children with Sanfilippo Syndrome. We are out to end this disease and help ensure treatments for as many children as possible along the way. We must reach our goal and mission before it is too late for these beautiful children. With a donation and a share, you can make the difference! Action saves lives. Action brings miracles. Our daughter Eliza is proof of that.
Donations are tax-deductible.
Other donation options:
-- www.CureSFF.org (click Donate)
--By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260
Follow the latest at www.facebook.com/ElizaOStory
Special thanks to the artists, who worked free of charge to help us:
Video by the amazing Benjamin Von Wong
Photograpy by the talented Anna Tenne Photography
Posted by Glenn O'Neill
Thank you for another great Birthday campaign to help the urgent efforts to Cure Sanfilippo for children! Your support means so much to us and other Sanfilippo families. Thank you for helping again.
Thanks for the 5 for 5 support, especially to Angela and others who encouraged it! I'm so glad to see the trial funded! I think we should still donate, though, as we can, while the gofundme page is still active. With Glenn and Cara staying home to keep Eliza germ free, I imagine money is tight, especially since they won't touch a penny of the money needed for the trial.
Hello, I am very inspired by your dedication to help your daughter and other children like her. I pray that these funds really make big steps in that direction. I don't know a lot about this syndrome, but from the little bit I read, it sounds like something is building up in her system which is then causing it to degenerate. I have 25 years of study and also helping people, via natural medicine. One recommendation that comes to mind, is Grape Seed Extract. I suggest this because I know what it does to prevent such processes in the body, at least on a basic level. I used to work with a company that distributed the grape seed extract and other special supplement type products before they were ever on the main stream market, so I learned a lot about them. Basically, the grape seed extract is a very powerful (I call it the Superman of them all) antioxidant. Oxidation in the body is the process that causes the body to break down and fall apart - it is also what causes a cut apple or avocado to turn brown. We all suffer from the oxidative effects of the environment, the sun, food, etc. Your daughter is suffering a similar effect from these compounds in her body (I know it is a crude comparison, but follow my crumbs...). One example is that it is especially helpful to diabetics or those who suffer from inflammation, also, reversing the damage of high blood sugars to the vessels, etc. Some people suffer inflammation and break down of the tissues that manifests as things such as tendonitis, which grape seed extract also does wonders for. Basically, what is in the seed of the grape is a compound that scavenges what is in the blood, joints, tissues, that is harmful to the body, the free radicals, allowing the body to quickly detox from them and heal itself. I know we are not talking about free radicals here in your daughter's body, yet I cannot help but wonder if the grape seed might offer her some benefit in repairing some of the damage that is being done, or at least slowing the process a bit? Note - the grape seed also works much better when used in conjunction with (working synergistically with) the other antioxidant vitamins, such as Ester-C (I do not ever recommend straight Ascorbic Acid, the purer more natural form of C you can find, the better - research helps), and natural Vitamin E also. This is not a comprehensive listing of the information on this supplement, but possibly it gives you something to work with and research, to consider. And to boost the grape seed even more, you can use a combination that includes Resveratrol, the other very helpful compound found in the skin of the grape. Always search for side effects and contraindications with any supplement. I just had to share because this is my all time favorite supplement. I suffer from the break down of my tissues due to Lupus - my body creates antibodies that attack my own DNA, and the result is incredible inflammation, to the point that it cost me my kidneys and did a lot of damage to my body. I was late diagnosed so that is why it did so much harm, but when I used grape seed it had amazing effects on reversing so much of the effects on my tissues, a Godsend.
This precious little girl and this cause has all my prayers
Your love for her is evident. All parents should love their kids like this....awesome thing.
Hello: I just wanted to tell you that when I clicked on your update, I got two different pages ... one with $74,000 raised (approx) and this one I am on now with the $2 Mil.... I just wanted to make you aware in case there is an illegitimate page out there somewhere.... and much love to Eliza and all of you... I am so happy to see she is getting better. Peace