Saving Carter

$1,018,460 of $1.0M goal

Raised by 9,740 people in 15 months
Created May 22, 2018
Jennifer Sarkar
on behalf of Cure Sanfilippo Foundation

***Please take a moment to read our latest update***

Would you please take a moment & watch the 3 minute video above, telling Carter and our family's story?  **All donations are tax deductible ** 

I'm Jen, Carter's Mom.  My son is dying. There’s no other way to say it.  My beautiful, perfect little dying.  As I lay him down to sleep each night, my tears overflow, and a deep aching is in my heart at the reality of losing my child.  There is only ONE THING that can change his fate, and we are asking for your help. We are asking you to help save Carter.

Carter grew up loving to play "pirates", climbing on jungle gyms, reading "Brown Bear", and singing his ABC's… like any child.  But Carter isn’t like any child.  Carter was diagnosed with a devastating, fatal disease called Sanfilippo Syndrome.  

Sanfilippo is a progressive brain disorder in little children, caused by just one missing enzyme… but it’s an important one.  Because he doesn’t have this enzyme, toxic storage material is building up in Carter’s brain every second.  You wouldn't know it by just looking at him, but this disease will soon begin shutting down critical areas needed to function.  As degeneration rapidly progresses, Carter will lose the ability to talk, swallow, walk, he will develop seizures, will suffer severe dementia, and die.  They call it a “Childhood Alzheimer’s.”

At age 6, Carter is starting to show the signs of the disease.  Right now he can still talk, some.  He can still run and play with his big sister Sophia.  For now, he’s hanging on, but just barely.  This campaign for his LIFE is as urgent as it gets.  It’s Now or Never for Carter.

Our #1 goal is to raise $1 milllion dollars in 1 month, to give Carter his rightful chance at LIFE.  We can’t just sit back and accept that he’s going to fade away and die, not when there is something tangible that could save him.  The $1M will go to fund a clinical trial that can give him that chance.

The love for a child is like no other.  If you are a parent, you know you would “go to the ends of their earth for your little ones”.  We are asking you… will you please go there with us now, for Carter?

We know how quickly these campaigns can grow if supported and if shared with the masses.  Yes, we need your help to contribute what you are able, and to help share so #SavingCarter can go #viral, and we can reach this goal.

Carter can LIVE.  Carter can get that chance at LIFE, and it will be thanks to you.  But it has to be now.

Our deepest thanks and words simply fail to express how incredibly grateful we are.

Jen, Samir (Carter’s Mom & Dad) and Sophia-age 8 (Carter's loving big sister, who would do absolutely anything for her little brother)

#SavingCarter  # NowOrNever  #1Million1Month


1. Donate what you can, no amount is too small and donations are tax deductible

2. Share on all social media with hashtags #SavingCarter #NowOrNever and #1Million1Month

3. Email this GoFundMe link and these steps to all contacts you know

4. Leverage any avenue you have to make this go viral (or send leads/tips to


Every dollar goes to the 501(c)(3) nonprofit organization, Cure Sanfilippo Foundation, who is funding this trial that can give Carter a chance at life. All donations are tax deductible. The research is a novel enzyme replacement therapy that has had remarkable results of helping fix the brain in closely related diseases. 100% of the funds raised here will go toward the research. We are currently racing against time to fund this trial and get it up and running. It will help Carter and so many other kids also hoping for a chance at life.  ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation new research projects in need of funding***



Getting a clinical trial up and running can cost millions of dollars. In Rare Diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents to drive and fund the research for treatments and a cure. This will help fund this specific clinical trial that can save Carter and possibly thousands of other children with Sanfilippo in the future. If we can’t fund it, the clinical trial will not happen, and we are nearly out of TIME.


Children’s cognitive abilities are completely taken away in less than 2 years on average, once they begin regressing. In this time, children regress back to an infantile state, likely never to return. This rapidly progressive neurodegenerative disease will soon start taking over completely. Carter is 6 years old. I don't want to lose my baby. This must happen now.


1. Manufacture clinical grade drug production

2. Final safety studies

3. FDA approval to proceed with clinical trial

4. Start clinical trial

If you would like to donate by check, please make the check out to: Cure Sanfilippo Foundation.  In memo, write:  For Saving Carter, and send to: 
Cure Sanfilippo Foundation
PO Box 6901
Columbia, SC 29260

Video thanks to Valentina Vee & Benjamin Von Wong.  Sound credits Andrew Kesler  Photos: Anna Tenne Photography

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✨Saving Carter Update✨

Our family cannot begin to express our gratitude to you all. You have shown us so much generosity, love, and support. You have proved that with help from your village anything is possible.

Cure Sanfilippo Foundation started with just two parents fighting to find a cure for their daughter and thousands of other children suffering. Five years later they have rallied families around the country and together we are leading the fight to cure Sanfilippo. The Foundation has funded numerous projects with the hopes of finding treatment options to slow, stop and hopefully cure this disease for children. The hard work and dedication of so many has been inspiring and is a huge pillar of strength to so many families, ours included. Our family has the upmost respect, trust and love for this incredible foundation that we are a part of. We truly believe in what it stands for and the extraordinary work being done.

With your help, you brought awareness of what Sanfilippo syndrome is to over 20 million people. That is INCREDIBLE awareness for anything, but especially a rare disease like Sanfilippo Syndrome. You are helping give Carter and so many other children the opportunity and chance at life they deserve. This is something we will never be able to thank you enough for.

Please see the latest update below from the Foundation. We fully support this update, and should you have any questions, we would be happy to discuss, as would Cure Sanfilippo Foundation.

Thank you so much ❤️
Xoxox Jen and Samir

Hello Saving Carter Supporters,
It has been a few months since our last update. I apologize for the delay. I will start by saying that in rare disease research, there are often speedbumps and unanticipated hurdles toward getting to a point of clinical trial for children. Often this can push timelines back to a point where decisions have to made about what is the best use of funds, particularly with a rapidly neurodegenerative disease like Sanfilippo Syndrome.
Thank you for your incredibly generous support of the Saving Carter campaign, with all donations directly received by Cure Sanfilippo Foundation. The specific intent of this campaign was to further a direct path to clinical trial for children like Carter, who have Sanfilippo Type A and are age 6 or older. In the few current clinical trials underway, for the most part, only children younger than age 6 are being included. In looking at timelines and the projects in the pipeline, the Cure Sanfilippo Foundation Board has made the decision that there are better opportunities to get to a point of clinical trial for children like Carter, other than the original project planned. While this change was not anticipated, it was necessary and was made with the specific intent of your donated dollars. It is a positive step forward.
While we are under confidentiality clauses, we can share that thanks to your contributions, we are moving forward rapidly with two scientific Sanfilippo Type A programs which could slow disease progression and improve quality of life. These are now approaching the clinical trial readiness stage and offer the most expedient path to a treatment for children like Carter. When battling time, every step forward is a life bridge to the next promising therapy. We have discussed this with Jen and Samir Sarkar, and they are in full agreement with these new paths forward.
Again, our deepest thanks from the whole Sanfilippo community, for your incredible efforts to further research. Thank you for believing in this mission and as always, our thanks to the Sarkar Family for being core members of Cure Sanfilippo Foundation, in the fight to save children. We will continue to keep you updated.
Thank you,
Glenn O’Neill
President of Cure Sanfilippo Foundation at
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⭐️Update on the Saving Carter Campaign⭐️

Everyday we received many messages asking us about what’s going on, when the trial will start, etc. below all of the information we currently know.

As frustrating as it is, making this trial a reality is not an over night type of thing and will take time to ensure that this trail can make it to the children. The first step is complete in making sure that the money was raised to move forward with developing the trial. This is ALL thanks to YOU!!! Truly, we can never truly thank you all enough! Thank you all for all the love, support, generosity, and kindness you have not only given our family but the entire Sanfilippo Community. You have given us all so much hope and this is something we are beyond grateful for ❤️❤️❤️❤️❤️

We promise to keep you all updated as we know as soon as we know anything new. For right now we continuously count our blessings {making sure to include all of you} and we will update you all on Carter from day to day, and week to week. Thank you!
Love, Xoxox Samir, jen, Sophia, and Carter aka C-Money

October 3, 2018,

Saving Carter campaign update

Thanks to the generosity of more than 9,000 supporters, the Saving Carter campaign raised over $1Million to enable Cure Sanfilippo Foundation to help fund a path to clinical trial for Sanfilippo Syndrome Type A. Carter’s story is one of many, where children have not yet been selected in a clinical trial. Without more clinical trial options for children like Carter, these precious kids will have no chance at life. Cure Sanfilippo is excited about the potential of this new clinical trial path. We are one of several Patient Advocacy Groups helping to support this research to ensure it will be able to reach children desperately in need. This program would not have proceeded forward without the timely commitments of these Patient Advocacy Groups.

This program is advancing a novel enzyme replacement therapy. In pre-clinical models, this therapy has shown to cross the blood brain barrier and reduce the main storage “buildup” of heparan sulfate by 70% in the brain. Getting a therapy across the blood brain barrier has been the major challenge in investigating treatments for Sanfilippo syndrome. There was also an 85% reduction in liver heparan sulfate levels as compared to control, which is evidence of the drug working in the body as well. The next step is to see if these amazing results translate and will have the same effectiveness in humans.

This trial will also allow children of an “older” age to potentially be included. We see this as a positive in that, of the few trials in existence, the trend is toward only treating children of a younger age (often less than 6). We feel that children older than 6 should not be left out of a chance, hence our excitement in this program. In August of 2018, this program received Orphan Drug designation by the FDA ( u-s-orphan-drug-designation-agt-184/).
The entire $1Million raised from Saving Carter is supporting this Sanfilippo Type A program. Cure Sanfilippo Foundation has been in close contact with the company running this program, and an update from them is expected soon.

While this program is currently being funded only for Sanfilippo Type A, we have hope that following closely behind will be a Sanfilippo Type B program. We look to raise funds for this, and several other therapeutic research options being explored around the world. Cure Sanfilippo Foundation has funded 17 research projects for Sanfilippo, many of which we hope can lead to clinical trials. These can all be found at Since we are still in the early “testing” phases of clinical trials, no one can be sure of what will work best in human children yet. The guarantee is that without some type of treatment options, children will not have a chance to escape the suffering and early death that Sanfilippo syndrome brings. This research, if successful, could go on to be an answer for thousands of children.

We are deeply thankful for the generosity, kindness and compassion of the Saving Carter supporters.
For any questions, please contact Glenn O’Neill, President of Cure Sanfilippo Foundation at
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We just wanted to say thank you so much for all of your help, love and support. YOU helped us reach the goal today!! Thank you for all of your help!!! 45 days and together we did It!!!!

Thank you so much for giving HOPE to Carter and so many other kids❤️ We will be sure to keep you updated on the progress in the coming months. Just amazing, THANK YOU!!!

Wishing you a very happy evening!

Samir, jen, Sophia, and Carter aka C-Money
+ Read More
Happy Monday!

We took yesterday off for some extra family time as it was definitely needed.

As many of you know we did not reach our goal on Saturday but we are determined and will not stop until the goal is met. We are back at it again today in hopes that we can raise up the rest of the $22,000 needed to reach our goal!!! We are hopeful that we can do this by next Sunday the faster the money is raised, the faster we can get the treatment to these children.

In all honesty, we can never thank you all enough for your support, help, and love ❤️There’s no possible way we would have gotten this far or come this close without you! You all are the driving force and we can never thank you enough.


Samir, jen, Sophia, and Carter aka C-Money #SavingCarter #NowOrNever #ItTakesAVillage #RallyTime

If you would like to see the video of Carter and his first sand crab experience please feel free to check it out at:
Instagram: @Saving_Carter
Facebook: @CartersChallenge
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Read a Previous Update

$1,018,460 of $1.0M goal

Raised by 9,740 people in 15 months
Created May 22, 2018
Jennifer Sarkar
on behalf of Cure Sanfilippo Foundation
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