Hannah's Hope Fund

General Organizational Information

Organization Name:

Hannah's Hope Fund

Organization Acronym:

HHF

Year Established:

2008

Type of organization:

Condition(s)-specific organization

Mission Statement:

The mission of Hannah's Hope Fund is to raise funding for a treatment and cure of Giant Axonal Neuropathy. We have an international team of scientists collaborating on therapy developement for GAN. Our scientists are focused on executing a clinical trial for an effective, safe treatment that impacts lives TODAY, not decades down the road.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Giant Axonal Neuropathy

Organizational Contact Information

Title:

Executive Director

Degree:

First Name:

Lori

Middle Initial:

Last Name:

Sames

Address:

19 Blue Jay Way

Rexford, NY, 12148

United States

See map: Google Maps

Phone:

+1 5183839053

Email:

lorisames@yahoo.com

Website Address:

http://www.hannahshopefund.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Families of affected individuals

Parents

Fathers

Mothers

Health care professionals

Researchers

The public

Students

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Genetic testing

Genetic information

Respite care

Educational materials include:

Website

Research updates

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Number of affected individuals registered:

Number of individuals for whom you have banked a DNA sample:

Number of individuals for whom you have banked a tissue sample:

Disease Characterization:

Phenotype/genotype correlation studies

Organization has access to patient medical records

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research

Awarding research grants

Providing information about clinical trials

Major research collaborators :

UNC at Chapel Hill Gene Therapy, Emory Univ., Columbia Univ, Laval Univ., INSERM in France, Indiana Univ., Children's Hospital of Boston

Major research interests of the organization:

Translational research for treatment and sponsoring of a clinical trial

Current projects:

AAV9 gene delivery to the CNS

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$350000