One Donation, Double the Good

$10,650 of $100,000 goal

Raised by 119 people in 21 months
One Donation, Double the Good!
We have been working hard the past year, ever since Kevin, Angela, myself and my husband first met at Boston Children's hospital. We've had several more equally adorable and sweet youngsters recieve a diagnosis of SPG47: Ethan (3yo), Wren (4yo), Sofia (6yo) and Susu (3yo). Their sweet faces are in the photo below and there stories can be found here . Their parents are equally committed to finding a cure and have joined the fight. We are lucky to have them.

Every single donation made in the last year has contributed towards launching two promising research options towards stopping or treating the destructive course of SPG47 . From now until January 31st, 2018, total donations up to $100,000 are being matched by an anonymous Angel Donor!

Your generous donation will be worth double! Triple if your company matches- be sure to ask.

Degeneration typically begins between 3 to 5-years-old. Paraplegia or quadriplegia, and loss of speech gained, are expected by early teens. With successful treatment, these children would continue to get stronger and work towards independence. Without, they will gradually lose what they’ve worked so hard to attain. Robbie is 3-years-old and distressing signs that the disease is progressing are already presenting on her.


Mimoun Azzouz , PhD, Director of Research and Innovation at the University of Sheffield, England, is the principal investigator for our gene therapy research.

Darius Ebrahimi-Fakhari, MD , in the Sahin lab at Boston Children’s Hospital is leading research using induced pluripotent stem cells (ipsc). This ipsc study involves testing existing FDA approved drug compounds to see if they can positively influence the effects of the mutated gene responsible for this disease.

All donations are tax deductible and go to the Cure SPG47, a non-profit 501c3 (Tax ID: 81-4300824) who will make sure that 100% of the funds go to the research, safety trials, and regulatory affairs needed to get this treatment to children and young adults now with this diagnosis, as well as those who have yet-to-be diagnosed.

Other ways to donate:

Visit http://www.curespg47.org/donations.php

Or send checks payable to Cure SPG47 to:

24R Pleasant St, Unit 2
Newburyport, MA 01950

We've now met several other children recently diagnosed with SPG47 and believe it is underdiagnosed. Initial assessment of Robbie’s first MRI led to a diagnosis of PVL (Periventricular leukomalacia ), brain damage often occurring prenatally or at birth. It took our neurologist’s shrewd eye to determine that the cause was likely genetic, spurring us to pursue genetic testing. With a clinical presentation in pediatrics patients remarkably similar to Cerebral Palsy’s spastic diplegia form, there could be many more children with a misdiagnosis. Awareness is key!

We need your help to raise research funds. If we raise $100,000, it will be DOUBLED by our Angel donor. This can make a significant impact in our preliminary proof-of-concept research, where any positive outcomes may lead to outside grant funding towards human clinical trials. We are calling on the generosity of family, friends, neighbors and strangers to help us #DoubletheGoodSPG47

With your help, we can reach this goal together and give these children a future that is as bright as their smile and as full as their laughter.  

With so much gratefulness,
Kasey and Chris Edwards, Kevin and Angela Duffy, and all of the parents fighting beside us

1. Donate what you can; no amount too small and donations are tax deductible
2. Share on all social media with hashtag #DoubletheGoodSPG47
3. Email our GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send us leads/tips)

Learn more about SPG47 at http://www.curespg47.org 

Follow Updates at https://www.facebook.com/Curespg47/ 
Learn more about the families at http://www.curespg47.org/our-story.php 

In the Press

PEOPLE Magazine

The Boston Globe

CBS Philly

Seattle Children's Hospital Blog

Inside Edition

WCVB Ch. 5 News

WPVI-TV Philadelphia

Boston Children’s Hospital THRIVING Blog

Boston Children’s Hospital Science and Clinical Innovation Blog

NBC Boston

A special thanks to The Jackson Lab in Bar Harbor, ME for donating their time, effort and money in funding a knock-out mouse model that will be essential in progress with gene therapy research.
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Wow everyone! We cannot thank you enough. Between this GoFundMe site and the Cure SPG47 website donations, we've made over $40,000 that will be DOUBLED to go towards our two research projects! This means that we have a very, very good chance of funding both projects through their proof-of-concept phases, giving us the opportunity to learn if either option (or both) could lead to stopping or slowing progression of SPG47! So, this is huge! Thank you, THANK YOU! Of course, we still have a ways to go to fund any human clinical trials but this is a great milestone.
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Great news everyone! With this campaign, website donations and checks, we've made almost $20,000!!! I am so happy about that! If you haven't shared this yet to friends and family, please consider it- the only way we'll hope to make it to $100,000 is by having a very, very wide audience (which is rather difficult to do when there are only 5 people in the US with this diagnosis that we know of!!!) Thank you all for your continued support!!!! XOXO
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Thank you, thank you everyone! Between this site and our website, we made $3780 yesterday. Double that with the match and we made $7560! That's awesome! We really, truly appreciated your generosity and kindness. We honestly would not be able to do this without the amazing support of others!
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$10,650 of $100,000 goal

Raised by 119 people in 21 months
Funds raised will benefit:
Cure SPG47, Inc.
Certified Charity
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Newburyport, MA
EIN: 814300824
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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Victoria Manganiello
18 months ago
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18 months ago
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18 months ago
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19 months ago
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