New Genes

New Genes (newgenes.org) is a not for profit established to raise funds for Gene Therapy for paediatric terminal diseases.

New Genes, Inc (NFP) is a not for profit foundation that has been established the Harry Stilwell's parents (Shawn & Susan) to raise funds for Gene Therapy Research and Clinical Trials. Harry is a 7 year-old boy from Sydney, Australia who now lives in Chicago, IL. He has a wonderful, warm personality, is full of life and is very cuddly. In 2016 Harry commenced kindergarten and his teacher reported

that he was getting very close to his work in order to see it. After numerous visits to various eye doctors, it was discovered that Harry was visually impaired to the point where he was declared 'legally blind'. The deterioration was frightening and puzzling. Further evaluation from a neurologist revealed the devastating diagnosis of Juvenile Batten Disease - a rare and fatal neurological disorder. Unfortunately, there was no help for Harry in Australia. Harry's only hope is in the USA where Gene Replacement Therapies are developing in clinical trials. Harry and his family are committed to getting behind the Gene Replacement medical movement. This page is to support Harry and others. By supporting him you will be giving DIRECTLY to New Genes and Gene Therapy Research and Clinical Trials. You can donate to New Genes by selecting the 'Learn More' link on this page and then select 'Details'.

09/06/2018

Fabulous experience! Wonderful staff.

08/26/2018

Wonderful to see the momentum behind Gene Therapy.

Your child's condition will continue to worsen and there is no cure

08/13/2018

Harry at 2 years of age perfect and at 8 years of age nearly blind. Still cute and determined. But! Donations help fund research to give not only our boy but all kids who are born with and suffer a rare disease, a chance at a normal life.

08/08/2018

So James dreams of meeting not just Marc Benioff at Dreamforce 2018 but ALL the brightest, most innovative Trailblazers in the world! Money raised goes to New Genes to fund life saving gene replacement therapy trials for previously designated 'incurable' diseases. Check out the speakers! https://www.salesforce.com/dreamforce/speakers/

08/07/2018

07/19/2018

Sometimes people really just blow you away. Tonight Harry received a handmade quilt from Art From The Heart. Julie and Cara heard about our situation and made this Redskins quilt for him . It’s complete with a secret pocket for him to find that has a picture message from them. Harry wants it to stay folded just the way it came - undisturbed! Very moving. Special. THANK YOU!

06/28/2018

BIG SHOUTOUT and hug to Marita Leister-Reid from our hometown in Sydney, Australia for incredibly generously setting up a birthday fund for her friends to put money in..so instead of Marita getting presents New Genes got a donation. THANK YOU! .

06/25/2018

Just waiting on one final payment and then we are getting ready to write a check for $US70,000!! This goes towards our goal of $US250,000. We are humbled and truly appreciative of all the donations and support. THANK YOU!! Love New Genes.

06/17/2018

HAPPY SUMMER VACATION EVERYONE! We have some exciting items up for grabs including a Mexico Vacation! ALL proceeds go directly to facilitate clinical trials for gene replacement therapy with the aim to combat Juvenile Batten Disease. HAPPY BIDDING!

06/08/2018

Over $10,000 worth of items at ridiculous starting bids! STARTS 5pm TONIGHT

06/04/2018

Father and son. x

05/25/2018

Thank you everyone that was involved. A wonderful outcome all round!

Address

Evanston, IL

Website

https://squareup.com/store/new-genes-inc

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Our Story

New Genes, Inc (NFP) is a not for profit foundation that has been established by Harry Stilwell's parents (Shawn & Susan) to raise funds for Gene Therapy Research and Clinical Trials.Harry is a 7 year-old boy from Sydney, Australia who now lives in Chicago, IL. He has a wonderful, warm personality, is full of life and is very cuddly. In 2016 Harry commenced kindergarten and his teacher reported that he was getting very close to his school work. After an evaluation by an opthamologist Harry was found to be ‘legally blind.’ Weeks later a neurologist revealed the devastating diagnosis of Juvenile Batten Disease - a rare and fatal neurological disorder. First sign of the disease often being sight loss :-(. Unfortunately, there was no help for Harry in Australia. Harry's only hope is in the USA where Gene Replacement Therapies are developing in clinical trials. Harry and his family are committed to getting behind the Gene Replacement medical movement. This page is to support Harry and others. By supporting him you will be giving DIRECTLY to New Genes and Gene Therapy Research and Clinical Trials. You can donate to New Genes by selecting the DONATE Button on our page.

THANK YOU