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HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC Organization Name provided in the GuideStar Exchange* as of 06/13/2012: HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC

Organization Name as listed in the IRS Business Master File as of 06/09/2014: HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC

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AKA  Hannah's Hope Fund
Rexford, NY
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC Organization Name provided in the GuideStar Exchange* as of 06/13/2012: HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC

Organization Name as listed in the IRS Business Master File as of 06/09/2014: HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Hannah's Hope Fund
Physical Address: Rexford, NY 12148 
EIN: 45-0593226
Web URL: www.hannahshopefund.org 
NTEE Category: H Medical Research
G Disease, Disorders, Medical Disciplines
Ruling Year: 2008 


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Mission Statement

DEDICATED TO FUNDING RESEARCH FOR A TREATMENT AND/OR A CURE FOR GIANT AXONAL NEUROPATHY ABA: Hannah's Hope Fund for GAN,  Hannah's Hope Fund

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

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Annual Revenue & Expenses (IRS Form 990, January 2012)

Fiscal Year Starting: January 01, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $599,811
Total Expenses $1,545,976

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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June 2012)

Mrs. Lori Sames

Board Chair (GuideStar Exchange,
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June 2012)

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Board of Directors (GuideStar Exchange,
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June 2012)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in June 2012

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Programs

Program: Natural History Study (GuideStar Exchange,
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June 2012)

Budget:
$300,000
Category:
Medical Research
Population Served:
Children and Youth (infants - 19 years.)
Adults

Program Description:

Giant Axonal Neuropathy Natural History Study Verified by: Columbia University, December 2011 First Received: December 29, 2011 | Last Updated: December 30, 2011 | Phase: N/A | Start Date: December 2011 Overall Status: Recruiting | Estimated Enrollment: 15 …Tell a FriendPrint Giant Axonal Neuropathy (GAN) is a devastating and rare childhood disease. Children with GAN develop increasing muscle weakness, impaired sensation, and at times mental retardation. GAN starts in infancy, leads to significant disability, and typically leads to death within the first 30 years of life. GAN is caused by a defect in the "gigaxonin" (GAN) gene, resulting in pathologically enlarged and... Brief Summary Official Title: “Clinical Study of Giant Axonal Neuropathy” Giant Axonal Neuropathy (GAN) is a devastating and rare childhood disease. Children with GAN develop increasing muscle weakness, impaired sensation, and at times mental retardation. GAN starts in infancy, leads to significant disability, and typically leads to death within the first 30 years of life. GAN is caused by a defect in the "gigaxonin" (GAN) gene, resulting in pathologically enlarged and dysfunctional nerves. Currently, there is no effective therapy. To find out what medications can help patients with GAN, the investigators have to conduct clinical trials. In this study, the investigators propose to prepare for future clinical trials and will invite GAN patients to join our research effort. The investigators will examine them regularly to better understand their disease. The visits will include questions, a physical exam, blood drawing, a lumbar puncture, and a skin biopsy. The visits will also include tests that assess the electrical conductivity of the patients' nerves as well as a test to measure the patients' brain wave activity. In addition, the investigators will be performing tests to evaluate the patients' motor function, their vision, and thinking ability. Identifying an effective GAN treatment is very important because there is currently none. Clinical trials are the only way to decide whether a new treatment works in GAN patients or not. With the future objective of conducting clinical trials in GAN, the proposed project has three specific aims. The first is to plan for clinical trials by developing reliable outcome measures, and establishing the infrastructure needed to carry out efficient clinical trials. The second is to further characterize the patient population from a clinical and molecular point of view, and the third aim is to utilize the information gathered in this study to further pre-clinical GAN drug development to select candidate drugs. Study Type: ObservationalStudy Design: Observational Model: Cohort, Time Perspective: ProspectiveStudy Primary Completion Date: December 2014Outcome Measures for this Clinical Trial Primary MeasuresGross Motor Function Measure (GMFM)Time Frame: Up to 24 months Safety Issue?: No Secondary MeasuresNerve Conduction Study (NCS)/Motor Unit Number Estimation (MUNE)Time Frame: Up to 24 months Safety Issue?: NoSomatosensory Evoked Potential (SSEP)Time Frame: Up to 24 months Safety Issue?: NoBrainstem Auditory Evoked Response (BAER)Time Frame: Up to 24 months Safety Issue?: NoPulmonary Function Testing (PFT)/Forced Vital Capacity (FVC)Time Frame: Up to 24 months Safety Issue?: No Criteria for Participation in this Clinical Trial Inclusion Criteria: 1. Clinical diagnosis of Giant Axonal Neuropathy.2. Documentation of the presence of a mutation in the GAN gene as determined by gene sequencing from a CAP/CLIA certified laboratory or an equivalent organization.3. Parents or if applicable subjects must give informed consent must be capable of complying with the study procedures.4. Willing and able to comply with all protocol requirements and procedures. Exclusion Criteria: 1. Unwilling or unable to travel to Columbia University Medical Center.2. Unstable medical condition precluding participation.3. Significant respiratory compromise that would interfere with safe travel to site of evaluation.4. Having a contraindication to the MRI safety requirements, including pacemaker or other implanted electrical device, brain stimulator, some types of dental implants, aneurysm clips (metal clips on the wall of a large artery), metallic prostheses (including metal pins and rods, heart valves, and cochlear implants), implanted delivery pump, shrapnel fragments, or history of claustrophobia. Gender Eligibility for this Clinical Trial: Both Minimum Age for this Clinical Trial: N/A Maximum Age for this Clinical Trial: N/A Are Healthy Volunteers Accepted for this Clinical Trial?: No Clinical Trial Investigator Information Lead Investigator: Columbia University Other Overall Clinical Trial Officials and Contacts Douglas M. Sproule, MD, MSc Principal Investigator Columbia University Overall Contact: Jonathan D. Marra, M.A. 212-305-2461 jdm2132@columbia.edu Additional Information Information obtained from ClinicalTrials.gov on March 15, 2012 Link to the current ClinicalTrials.gov record. http://clinicaltrials.gov/show/NCT01503125 Study ID Number: AAAI4500 ClinicalTrials.gov Identifier: NCT01503125 Health Authority: United States: Institutional Review Board

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Impact Summary from the Nonprofit

Hannah’s Hope Fund is a 501c3 public charity dedicated to finding a treatment and cure of Giant Axonal Neuropathy, (GAN), a rare, fatal disorder. Eight year old Hannah Sames, of Rexford, NY is the inspiration of Hannah’s Hope Fund, the only organization in the world focused on a treatment for this ravaging disorder. Children with GAN die of progressive nerve death. They eventually lose the ability to walk, move, speak and swallow. They die in the second of third decade, typically from pneumonia. Since August of 2008, the collaborative team of scientists working with Hannah’s Hope Fund have developed gene therapy to treat the nerve cells in the spinal cord and brain with a healthy copy of the GAN gene. Scientists use a benign viral vector as a delivery truck to transport a healthy copy of the GAN gene to nerve cells, providing a life sustaining protein that is missing in cells of children with GAN. The scientists working on this gene therapy approach for GAN feel it is ready for a human clinical trial. We met with the FDA on Jan. 26, 2012 and now have a clear path forward. If the FDA required safety studies go as planned, we will be ready to begin a trial this Fall of 2012. It is estimated that we need to raise another $500,000 to fund the Phase 1 clinical trial.  Since GAN is very rare, it doesn’t attract the attention of pharmaceutical or biotechnology companies due to smaller profits. Therefore, it is reality that the families of loved ones suffering from rare disorders must raise the funds for therapy development and clinical trials in order to saved loved ones. It is our hope that a Biotech will take over the project and bring it through Phase 2 and Phase 3 trials if the Phase 1 study reveals GAN gene therapy is safe, and the data indicate it either stops or slows progression of the disease. Please choose to get involved in our mission.
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