Reagan's Hope: A Cure for Sanfilippo

$37,713 of $100,000 goal

Raised by 309 people in 61 months
Our lives became complete on March 1, 2012 when our beautiful baby girl, Reagan, came into this world. Today, she is a happy, energetic two year old who loves to dance and play.  

Recently, our world has been turned upside down when Reagan was diagnosed with Sanfilippo Syndrome, otherwise known as Mucopolysaccharidosis IIIA (MPS IIIA), a rare and terminal genetic disease that affects children and has no cure or treatment. We were told that she will slowly lose all the skills she has gained, including the ability to talk, walk, and even swallow, eventually leading to death in the early teen years. Can you imagine being told that you were basically going to have to watch your child slowly die before your eyes? We were devastated!

Then we found hope- Reagan's Hope! Researchers at Nationwide Children's Hospital in Columbus, Ohio, our very own hometown, have created a gene therapy treatment that could cure our daughter in time to save her life so that she remains the happy and seemingly healthy child she is today. But we have very limited time, as she's already showing early signs of the disease. Over the next couple of years, irreversible damage to her brain and body will result in loss of mental function, restlessness, sleeplessness, difficult behaviors, and losing the ability to talk by school age. The clinical trial will be ready soon but we need your help. Please help us raise awareness and funds for clinical trials that could save our daughter's life and other children like her. We are in a race against time to stop this awful disease. Reagan's Hope: A Cure for Sanfilippo, can't be accomplished without your help.

Reagan’s Hope is recognized as a nonprofit organization by the IRS.
IRS Code: Section 501(c)(3)
Tax Identification Number: 46-5572090

Find out more at www.reaganshope.org or www.facebook.com/reaganshope
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This past year has been quite a roller coaster ride with some really big highs and lows. We were thrilled to see the gene therapy clinical trial for MPSIIIA get started in May of 2016 at Nationwide Children's Hospital. So far 6 patients have been dosed safely. You can see some of the updates from the trial on our website at www.ReagansHope.org.
As mentioned in our last update, we made the tough decision to enroll Reagan in an enzyme replacement therapy clinical trial in the spring of 2015. We were devastated to find out a year ago, in August of 2016, her clinical trial had been cancelled due to lack of results the pharmaceutical company hoped to see. It felt like diagnosis day all over again. We knew this treatment would not be a cure, but we at least hoped it was slowing the progression of the disease. Many families do feel that it was helping.
We were devastated once again just recently when we found out another enzyme replacement therapy clinical trial was cancelled for MPSIIIB patients. We know what those families are going through and our hearts go out to them. Again, many families believed this treatment was helping.
This is why our mission is so important and far from over. We will not stop until ALL Sanfilippo kids have a chance at treatment or a cure. Thank you so much for your continued support!
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Thank you to all our supporters out there! We continue to raise awareness and funds for research to find a cure for Sanfilippo Syndrome. This spring Nationwide Chiildren’s Hospital and Abeona Therapeutics received FDA approval to move forward with their gene therapy clinical trial. This is very exciting news!!! Because time is not on our side as Sanfilippo Syndrome is a degenerative disease, we made the tough decision last year for Reagan to participate in an enzyme replacement therapy trial whereby we travel to Minnesota every two weeks for treatment. We are hopeful that this treatment will slow the progression of the disease. However, this year has not been an easy one. Reagan continues to be a happy 4 year old; however, we do see learning becoming more and more difficult for her. Where once she was gaining speech, she now struggles to maintain what she has. Her hyperactivity and lack of attention make learning quite difficult. This is why our mission is so urgent! We will continue to raise money for Sanfilippo research to help ALL children with this disease. Please help us finish our race against time to save our precious children!
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Thank you everyone for your support! Progress continues to be made on the Sanfilippo research at Nationwide Children's Hospital. Reagan enjoyed being a patient champion for the Columbus Marathon benefitting Nationwide Children's Hospital on October 19th. Thank you to Children's for creating this video about Reagan's story, helping us to spread awareness and raise money for this clinical trial. Even though the marathon is over, our race against time is not. The clinical trial is not fully funded yet, so please help us spread our message and raise money for this critical research. Help be part of the cure!
Reagan's story
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Connie Seamans Bakunas
61 months ago

I will be giving my money to Ron.

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$37,713 of $100,000 goal

Raised by 309 people in 61 months
Created April 30, 2014
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JK
$50
Jonathan Kelley
2 months ago

Happy Belated Birthday Reagan!! Jon, Stacy, Vivian, and Brooklyn

UM
$50
Uncle Jeff & Aunt Marti
2 months ago

Reagan, here's an overdue b-day gift!

GP
$75
Greg Pappas
2 months ago
$50
Anonymous
2 months ago
$25
Anonymous
2 months ago
GF
$50
Gassin Family
2 months ago

Happy Birthday, Reagan!

TG
$500
Tiff Griffith
3 months ago

I am able...

JN
$50
John Nye
7 months ago
$100
Shamus Cassidy
7 months ago
Connie Seamans Bakunas
61 months ago

I will be giving my money to Ron.

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