Refsum Gene Therapy Fundraiser

Help Raise $15,000 towards Gene Therapy research for Refsum Disease

Sára Banai's page

Member

$175 by 3 people

Sára Banai

Total

$12,564

$15,000

Global DARE Foundation

Team Members

Sára

$175 / 3 donors

Kristie

$3,963 / 41 donors

Susan

$2,139 / 9 donors

John

$2,214 / 4 donors

Kate

$525 / 5 donors

Marlena

$50 / 1 donor

Kathryn

$39 / 1 donor

Event

Event Details

Please note: tickets are required to attend this event.

Refsum Gene Therapy Fundraiser

October is Blindness Awareness Month and October 8th is World Sight Day. Help Global DARE Foundation raise money for a pilot study in Gene Therapy for Refsum Disease. Setup a fundraising page and/or participate in the DARE Step Challenge. All proceeds will go to support the pilot study. Global DARE Foundation is holding a 6-week step challenge that goes from October 5th to November 15th. Any exercise can be converted to steps for this challenge. Prizes will be awarded to the top 3 steppers at each step level. Participants donating or fundraising at least $200 will receive a free event t-shirt.

Date & Time

Mon, October 5th 2020
2:02 PM EDT -
Sun, November 15th 2020
2:02 PM EST

Add to Calendar 2020-10-05 14:02:07 2020-11-15 14:02:29 America/New_York Refsum Gene Therapy Fundraiser October is Blindness Awareness Month and October 8th is World Sight Day. Help Global DARE Foundation raise money for a pilot study in Gene Therapy for Refsum Disease. Setup a fundraising page and/or participate in the DARE Step Challenge. All proceeds will go to support the pilot study. Global DARE Foundation is holding a 6-week step challenge that goes from October 5th to November 15th. Any exercise can be converted to steps for this challenge. Prizes will be awarded to the top 3...

Location

This event will be hosted digitally.

Details to view the event are private and will be provided upon ticket purchase.

Story

Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease.  DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.

Adult Refsum disease is a genetic disorder that impacts the metabolism of phytanic acid which is found in food.  The disease significantly impact quality of life of patients by causing vision loss, hearing loss, loss of smell, mobility issues and more.  People with Refsum Disease must also go on a very strict diet to slow progression of current symptoms and avoid life threatening symptoms.   A better therapy is needed!

As seen in Global DARE Foundation's recent webinar, Refsum disease is a strong candidate for Gene Therapy.  We are running this fundraiser to raise the necessary funds to start the pre-clinical work for Gene Therapy.   

Please support us in our mission to find a cure!

 

Supporters

Lions Foundation of Greenwich made a donation

3 days ago

$1,000

World Site Day Facebook Fundraiser made a donation

6 days ago

$220

Michael Vasili's Sky Dive Fundraiser made a donation

6 days ago

$291

Kate Thompson received a new donation from Lulu

2 weeks ago

$50

Woof woof

Kate Thompson received a new donation from M Antrum

3 weeks ago

$50

Kate Thompson received a new donation from Karen Robinson

3 weeks ago

$50

Go you xx

Sára Banai received a new donation from Krisztian Kovacs

3 weeks ago

$50

Kate Thompson received a new donation from Rebecca Crosby

3 weeks ago

$100

Sára Banai received a new donation from Anonymous

3 weeks ago

$100

Sára Banai received a new donation from Anonymous

3 weeks ago

John DeMarco received a new donation from Anonymous

3 weeks ago

$2,000

Kristie DeMarco received a new donation from Edward DeMarco

3 weeks ago

$78

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