I am including some information I received yesterday concerning a gene therapy 
treatment which has been approved by the FDA for people with Retinitis 
Pigmentosa. I am sending it to all the lists I currently belong to because it 
needs to get to as many RP sufferers as possible.
Marie
Foundation Fighting Blindness Celebrates Historic FDA Approval of 

First Gene Therapy to Treat Blindness

Foundation’s early investment in LUXTURNA™ boosts vision-restoring treatment 
for people with RPE65 mutations and will help advance other gene therapies 
currently in development.

(Columbia, MD) — Today’s U.S. Food and Drug Administration (FDA) approval of 
voretigene neparvovec, to be marketed as LUXTURNA, will be life-changing for 
patients with vision loss due to mutations in the RPE65 gene and a watershed 
moment for the inherited retinal disease field, says the Foundation Fighting 
Blindness. The Foundation was an important early investor in LUXTURNA, 
providing $10 million in critical seed funding for the therapy.

The groundbreaking treatment is the first gene therapy for the eye and for any 
inherited disease to be approved by the FDA. The treatment restores vision by 
delivering working copies of the RPE65 gene directly into the retina, thereby 
compensating for the nonfunctional, mutated genes.

“We are thrilled for the patients whose lives will change dramatically because 
of this treatment,” says David Brint, Foundation Fighting Blindness chairman. 
“We are also pleased to have this concrete example of the strength of the 
Foundation’s strategy of identifying and investing early in promising 
treatments. Doing so helps attract industry investment that can usher promising 
treatments through clinical trials and ultimately FDA approval.” 

LUXTURNA is the result of more than two decades of research and development at 
the University of Florida, the University of Pennsylvania, Children’s Hospital 
of Philadelphia, and Spark Therapeutics. The Foundation Fighting Blindness’ 
seed investment allowed researchers to take the therapy through the early 
investigational stages critical to any treatment development.

“LUXTURNA will be life-changing for people with an inherited retinal disease 
caused by RPE65 mutations. For them, the treatment means alife of independence. 
Also important is the momentum this approval provides to other gene-based 
therapies — for the eye and other diseases — now in the clinic,” says Benjamin 
Yerxa, PhD, Foundation CEO.

An additional noteworthy milestone is the demonstrated value of a new clinical 
endpoint devised by the Spark Therapeutics team to measure LUXTURNA’s impact. 
The new measure, a multi-luminance mobility test (informally called the maze), 
measured the impact of the treatment beyond the traditional visual acuity 
measure — the eye chart. This new clinical endpoint moves vision measures 
beyond the eye chart, which is particularly significant for people with low or 
no vision.

Spark Therapeutics, which holds the biologics license for LUXTURNA and 
conducted the clinical trials that showed its safety and efficacy, will also 
manage the treatment rollout. Spark has announced that in order to ensure the 
treatment is safely administered, it will only be available through a small 
number of centers of clinical excellence across the country. Spark has also 
expressed its commitment to educating third-party payers about the value of 
LUXTURNA and to working to help ensure treatment access to all eligible 
patients.

Anyone in need of more information about LUXTURNA should contact Spark 
Therapeutics at 1-833-SPARK-PS (833-772-7577). Another resource for information 
is Spark’s website: www.Sparktx.com.

 
Foundation Fighting Blindness Celebrates Historic FDA Approval of 

First Gene Therapy to Treat Blindness

Foundation’s early investment in LUXTURNA™ boosts vision-restoring treatment 
for people with RPE65 mutations and will help advance other gene therapies 
currently in development.

(Columbia, MD) — Today’s U.S. Food and Drug Administration (FDA) approval of 
voretigene neparvovec, to be marketed as LUXTURNA, will be life-changing for 
patients with vision loss due to mutations in the RPE65 gene and a watershed 
moment for the inherited retinal disease field, says the Foundation Fighting 
Blindness. The Foundation was an important early investor in LUXTURNA, 
providing $10 million in critical seed funding for the therapy.

The groundbreaking treatment is the first gene therapy for the eye and for any 
inherited disease to be approved by the FDA. The treatment restores vision by 
delivering working copies of the RPE65 gene directly into the retina, thereby 
compensating for the nonfunctional, mutated genes.

“We are thrilled for the patients whose lives will change dramatically because 
of this treatment,” says David Brint, Foundation Fighting Blindness chairman. 
“We are also pleased to have this concrete example of the strength of the 
Foundation’s strategy of identifying and investing early in promising 
treatments. Doing so helps attract industry investment that can usher promising 
treatments through clinical trials and ultimately FDA approval.” 

LUXTURNA is the result of more than two decades of research and development at 
the University of Florida, the University of Pennsylvania, Children’s Hospital 
of Philadelphia, and Spark Therapeutics. The Foundation Fighting Blindness’ 
seed investment allowed researchers to take the therapy through the early 
investigational stages critical to any treatment development.

“LUXTURNA will be life-changing for people with an inherited retinal disease 
caused by RPE65 mutations. For them, the treatment means alife of independence. 
Also important is the momentum this approval provides to other gene-based 
therapies — for the eye and other diseases — now in the clinic,” says Benjamin 
Yerxa, PhD, Foundation CEO.

An additional noteworthy milestone is the demonstrated value of a new clinical 
endpoint devised by the Spark Therapeutics team to measure LUXTURNA’s impact. 
The new measure, a multi-luminance mobility test (informally called the maze), 
measured the impact of the treatment beyond the traditional visual acuity 
measure — the eye chart. This new clinical endpoint moves vision measures 
beyond the eye chart, which is particularly significant for people with low or 
no vision.

Spark Therapeutics, which holds the biologics license for LUXTURNA and 
conducted the clinical trials that showed its safety and efficacy, will also 
manage the treatment rollout. Spark has announced that in order to ensure the 
treatment is safely administered, it will only be available through a small 
number of centers of clinical excellence across the country. Spark has also 
expressed its commitment to educating third-party payers about the value of 
LUXTURNA and to working to help ensure treatment access to all eligible 
patients.

Anyone in need of more information about LUXTURNA should contact Spark 
Therapeutics at 1-833-SPARK-PS (833-772-7577). Another resource for information 
is Spark’s website: www.Sparktx.com.


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