Saving Eliza

$2,054,810 of $4.0M goal

Raised by 36,794 people in 35 months
Glenn O'Neill   COLUMBIA, SC

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.

Our Story

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 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 Sanfilippo children the chance Eliza was given, thanks to the support here. We are witnessing a miracle… and together again, we can make many more miracles happen for these beautiful little children.  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)



Watch the original Saving Eliza video from April 2014 here:   https://www.youtube.com/watch?v=G0IY8qG7J-I

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


Baby Sadie

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

+ Read More
Update 35
16 days ago
1
1
Eliza Update Video! Thanks to you, we are witnessing a miracle! How else can you 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 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 Sanfilippo children the chance Eliza was given, thanks to the support here. We are witnessing a miracle… and together again, we can make many more miracles happen for these beautiful little children. 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)
Please watch, please share, and please give. Every bit matters.

All funds go directly to our Cure Sanfilippo Foundation (Tax ID: 46-4322131) to advocate for and fund research directed towards a cure or treatment options for children with Sanfilippo. Donations are tax deductible.
Share Eliza's Miracle
+ Read More
Update 34
3 months ago
Saving Eliza treated! Announcement. Whew….deep breath…

The First patient treated! It is with great humility and joy that we share with you that our daughter Eliza was treated several days ago with this experimental one-time intravenous gene therapy, the first of its kind in the world for Sanfilippo! The next child will be enrolled soon, and more will follow. We have so much THANKS to the so many people who made this happen and the many years of hard work, much of it long before Eliza was diagnosed. Thank you to all of the Sanfilippo families fighting for a cure. THANK YOU to our army of supporters around the world for ‪#‎SavingEliza‬ & Cure Sanfilippo Foundation that helped push this along and for your continued unwavering support!

While we can’t disclose any trial details, Eliza is doing just fine and we watch her closely. The team at Nationwide Children's Hospital was incredible and caring and kind to our family & Eliza…we thank the doctors, researchers, clinical trial staff, nurses and the chaplain.

For our followers and supporters, we are thrilled to report these tangible results of the trial starting! Every bit of your support mattered and is helping save children’s lives. A huge step forward, and we hope this is the beginning of the end of Sanfilippo.

As Eliza’s parents, we are thrilled that she is getting this chance, but immediately our thoughts go to the so many Sanfilippo children around the world. These trials will only treat a handful of patients, and the many many other children with Sanfilippo who aren’t included into this trial don’t have time to wait. With your continued support, we can help give more kids a similar chance as Eliza.

Thank you with every bit of love we have in our hearts!! You did it!

From the O’Neill Family. www.CureSFF.org ‪#‎CureSanfilippo‬ Foundation

PS – Please share this great news and stay tuned for future updates coming soon to help spread more awareness for our cause to Cure Sanfilippo

Abeona Therapeutics Inc press release: http://www.marketwired.com/press-release/abeona-therapeutics-doses-first-patient-phase-1-2-trial-with-abo-102-gene-therapy-patients-nasdaq-abeo-2125579.htm
Saving Eliza treated!
+ Read More
Update 33
6 months ago
3
3
UPDATE: The goal has been reached here on GoFundMe. You’ve helped bring HOPE to families, including ours. For that, our forever thanks. The clinical trial we helped fund with a large portion of the generous donations here, has not begun yet. As parents, we wait. As a Foundation, we press on with the greatest of urgency for the so many children living with Sanfilippo and hoping for a chance. Our Foundation continues its focus on raising funds for more research for more treatments and more trials for more children. We know you care about our family and our daughter Eliza and we THANK YOU. We know you also care about our Foundation and the efforts to help as many Sanfilippo children as possible. So many families are watching their little ones lose more and more skills as the rapid disease takes hold. With that, we embark upon our efforts for fundraising and awareness this year in 2016, showing that Sanfilippo Syndrome is everywhere in the United States.

We introduce the 50 State Challenge to Cure Sanfilippo, running through the final day of 2016. Our goal is to raise advocacy, awareness, support and fundraise $40,000 from supporters in EACH of the 50 States, to raise $2M total this year. We have until year end. Some have said we can’t do it again. We say the children can’t afford if we don’t succeed. When kids’ lives are on the line, there isn’t an option. To see how YOUR STATE is doing, see our new campaign at: www.crowdrise.com/50StateChallenge . We would LOVE to see you join us there and advocate for this campaign in your home state. We can’t do it without you. #50StateChallenge

It’s been a long road. This story’s final chapter, not yet written.

Sincerest thanks,
Glenn & Cara O’Neill
curesff@gmail.com
www.facebook.com/ElizaOStory

**Note: We only have the best things to say about GoFundMe as a crowdfunding tool, the management and staff. They have helped us tremendously along the way. The only reason we’ve moved to a new platform was the ability to create the individual State campaigns. We plan to keep this open to provide updates here as well.
+ Read More
Update 32
7 months ago
3
3
Video of Eliza talking! This is from last week on January 20, 2016. Eliza is 6 years old now. She's holding on and fighting so very hard. We are incredibly proud of her. We have HOPE she will get her chance soon at a treatment to stop this disease. Our Foundation fights for all of the children here and at www.CureSFF.org. Our forever THANKS to you for staying with us on this journey!
Eliza Talking!
+ Read More
Read a Previous Update
Help spread the word!
 56K total shares
Patti Walker
13 months ago

Evie raised $127 with her lemonade stand today! Just donated it to cureSFF! Hang in there, lovely people!

+ Read More
Randy Ingle
20 months ago
9
9

I wipe my eyes as I read about this precious little girl. She has my prayers and my donation.

+ Read More
Julie Imhann
18 months ago
4
4

Beautiful father- daughter dance! You are such an amazing and inspiring family. Praying for Eliza and all the other children out there.

+ Read More
Patti Kozlowski
21 months ago
4
4

1 more dollar from every supporter and this would be a done deal. I can do that - can you?

+ Read More
Jen DeFrates
21 months ago
4
4

I was going to suggest the same thing! $1 more dollar from every supporter and this would be a done deal. I can do that - can you?

+ Read More
Jessica Hueber Smith
21 months ago
3
3

I was just thinking about Eliza's story and thought I should check out the page again, hoping you'd made your goal. I was so thrilled to see that you did! The internet can be an amazing tool when used for good.

+ Read More
Wendy Wareham
21 months ago
2
2

Much love and many prayers for you all! Stay strong. We're all praying for you!

+ Read More
Colin Murcray
21 months ago
2
2

Did it! 5$ for Eliza's 5 year battle. Let's keep it going. A dollar, 5, 10. We are so close!

+ Read More
La Liz
3 months ago
1
1

So pleased to hear this good new! Stand and fight Eliza! Hugs.

+ Read More
Lehla Lee McMahan
3 months ago
1
1

Excited and hopeful...my prayers continue to be with your family and all who suffer.

+ Read More
Shannon Haynie
3 months ago
1
1

I rejoice with you! What great news! May God be praised!

+ Read More
Colin Murcray
21 months ago
1
1

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.

+ Read More
Shiloh Jacobs
21 months ago
1
1

I'm in! Any way to contact those who've donated and share an update to bring this back to the spotlight. $1 each gets us there. So doable...spread the word!!!!!!!

+ Read More
Bea Gibson
21 months ago
1
1

I think VonWong should get a big applause for helping to make this happen! Go to his site and look at his beautiful work. He gave of himself and look what happened...Thank You VonWong!

+ Read More
Sara Miller
6 months ago

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.

+ Read More
Carlos Orozco
12 days ago

Please have the O'Neils contact me. I can help to cure the disease. My name is Carlos Orozco, reside in Houston. My tel. # 832 7943994.

+ Read More
Erin Oneill
13 days ago

I was reading threw Gofundme pages and came across your baby girl ! I don't have the money right now as I just set up a Gofundme as well but I will be donating the first $ 100 I make on mine for her ! God is Good and I'm praying for her and your family . I have two little girls and my 4 year old and her look similar !! She's a beauty and sill be in my daily prayers ! Will hope to donate soon and follow up on her ! Bless her beautiful soul and heart xo

+ Read More
Margaret Courtney
16 days ago

Eliza has been on my daily prayer list for years. I have been happy to make my small donations and asked my family to remember my birthday with their donations. This is music to my ears!!! I will continue to pray and donate. Thanks for this update.

+ Read More
Ebonie Love
3 months ago

If theres any way you can give me some tips im going through something major and cant get a breakHi my mom is going in for a major surgury and i need help with her fundraising i started i gofund me and i just need a little help advertising here's the link if you can helphttps://m.facebook.com/story.php?story_fbid=1246271698724777&id=100000258752949 Please help click link

+ Read More
Raise Hope
4 months ago

This is an incredible story! Please help ThePOH with their first leadership convention. See campaign for details! Thank you! Wish you the best of luck!

+ Read More

$2,054,810 of $4.0M goal

Raised by 36,794 people in 35 months
Created October 2, 2013
EG
$5
Edel Gargan
3 hours ago
JW
$50
Joanne Walker
8 hours ago
AB
$40
Allison Blair
1 day ago
$25
Anonymous
1 day ago
SM
$50
Stephen Matty
2 days ago
MH
$100
MIke Heathington
2 days ago
JC
$100
Jill Cottone
2 days ago

In honor of Katie Walton.

+ Read More
$10
Anonymous
3 days ago
VR
$25
Vittoria Rosone
4 days ago
CM
$10
Curtis Markley
4 days ago
Patti Walker
13 months ago

Evie raised $127 with her lemonade stand today! Just donated it to cureSFF! Hang in there, lovely people!

+ Read More
Randy Ingle
20 months ago
9
9

I wipe my eyes as I read about this precious little girl. She has my prayers and my donation.

+ Read More
Julie Imhann
18 months ago
4
4

Beautiful father- daughter dance! You are such an amazing and inspiring family. Praying for Eliza and all the other children out there.

+ Read More
Patti Kozlowski
21 months ago
4
4

1 more dollar from every supporter and this would be a done deal. I can do that - can you?

+ Read More
Jen DeFrates
21 months ago
4
4

I was going to suggest the same thing! $1 more dollar from every supporter and this would be a done deal. I can do that - can you?

+ Read More
Jessica Hueber Smith
21 months ago
3
3

I was just thinking about Eliza's story and thought I should check out the page again, hoping you'd made your goal. I was so thrilled to see that you did! The internet can be an amazing tool when used for good.

+ Read More
Wendy Wareham
21 months ago
2
2

Much love and many prayers for you all! Stay strong. We're all praying for you!

+ Read More
Colin Murcray
21 months ago
2
2

Did it! 5$ for Eliza's 5 year battle. Let's keep it going. A dollar, 5, 10. We are so close!

+ Read More
La Liz
3 months ago
1
1

So pleased to hear this good new! Stand and fight Eliza! Hugs.

+ Read More
Lehla Lee McMahan
3 months ago
1
1

Excited and hopeful...my prayers continue to be with your family and all who suffer.

+ Read More
Shannon Haynie
3 months ago
1
1

I rejoice with you! What great news! May God be praised!

+ Read More
Colin Murcray
21 months ago
1
1

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.

+ Read More
Shiloh Jacobs
21 months ago
1
1

I'm in! Any way to contact those who've donated and share an update to bring this back to the spotlight. $1 each gets us there. So doable...spread the word!!!!!!!

+ Read More
Bea Gibson
21 months ago
1
1

I think VonWong should get a big applause for helping to make this happen! Go to his site and look at his beautiful work. He gave of himself and look what happened...Thank You VonWong!

+ Read More
Sara Miller
6 months ago

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.

+ Read More
Carlos Orozco
12 days ago

Please have the O'Neils contact me. I can help to cure the disease. My name is Carlos Orozco, reside in Houston. My tel. # 832 7943994.

+ Read More
Erin Oneill
13 days ago

I was reading threw Gofundme pages and came across your baby girl ! I don't have the money right now as I just set up a Gofundme as well but I will be donating the first $ 100 I make on mine for her ! God is Good and I'm praying for her and your family . I have two little girls and my 4 year old and her look similar !! She's a beauty and sill be in my daily prayers ! Will hope to donate soon and follow up on her ! Bless her beautiful soul and heart xo

+ Read More
Margaret Courtney
16 days ago

Eliza has been on my daily prayer list for years. I have been happy to make my small donations and asked my family to remember my birthday with their donations. This is music to my ears!!! I will continue to pray and donate. Thanks for this update.

+ Read More
Ebonie Love
3 months ago

If theres any way you can give me some tips im going through something major and cant get a breakHi my mom is going in for a major surgury and i need help with her fundraising i started i gofund me and i just need a little help advertising here's the link if you can helphttps://m.facebook.com/story.php?story_fbid=1246271698724777&id=100000258752949 Please help click link

+ Read More
Raise Hope
4 months ago

This is an incredible story! Please help ThePOH with their first leadership convention. See campaign for details! Thank you! Wish you the best of luck!

+ Read More
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