HHF IS A NON-PROFIT VIRTUAL BIOTECH FOCUSED ON GAN

What is Hannah’s Hope Fund? (HHF)

Hannah’s Hope for Giant Axonal Neuropathy, Inc. is a not-for-profit, public charity incorporated in New York State on April 24th, 2008. Shortly thereafter, a DBA (doing business as) was filed with NY State, allowing this charity to operate under the name ‘Hannah’s Hope Fund’ (HHF). This charity is also registered with the NY State Charities Bureau. Hannah’s Hope Fund obtained 501c3 status by the IRS on July 18th, 2008. Therefore, all donations made to HHF are tax-deductible if you itemize your IRS tax return. The Employer Identification Number (EIN): 45-0593226.

Background of Hannah’s Hope Fund

HHF was started by Lori Sames and Matt Sames following the GAN diagnosis of their youngest daughter, Hannah, in March of 2008. At the time of Hannah’s diagnosis, they were only able to find one scientist in the world actively studying GAN and they thought Hannah was the only one with this disease.

After combing the globe to find scientists who had published on GAN or related pathways, HHF brought 20 research scientists together in Boston in August of 2008 for the first-ever symposium on GAN. The goal of this meeting was to discuss everything known about GAN, prioritize therapeutic approaches, and prioritize basic research studies needed to learn more about underlying disease mechanisms. The team of scientists prioritized gene replacement therapy as the top priority therapeutic approach HHF should pursue in hope of getting a possible treatment to patients currently living with the disease.

Dr. Jude Samulski, Director of the University of North Carolina (UNC) at Chapel Hill Gene Therapy Center, sent research associate, Dr. Steven Gray to the symposium to assess whether or not gene therapy was a viable approach for GAN. HHF began funding Dr. Gray’s work on GAN on Oct. 1, 2008. Just 3 years and 3 months later, HHF was in front of the FDA for our Pre-Investigational New Drug meeting, for this new drug – a biologic referred to as AAV9/GAN.

Fast forward to May of 2015 and the world’s first patient received the first therapeutic gene to the spinal cord. Yes, this was a GAN patient! Due to the commitment and efforts of Dr. Gray, utilizing more than 25 years of experience obtained at the UNC Gene Therapy Center, there is now a gene therapy approach for GAN that is still in clinical trials. None of this would be possible without the multitude of HHF supporters who donated and helped raise funding.

Every clinical trial is a human experiment. We look forward to the progression of the clinical trial to help understand whether gene therapy will be an effective treatment for GAN.

Mission of Hannah’s Hope Fund

The mission of HHF is to raise funds for treatments and eventual cure of Giant Axonal Neuropathy (GAN).

Hannah’s Hope Fund Team

Board of Directors 2022

Lori Sames

CEO & Executive Director

Lori received a Bachelor’s degree in economics from St. Michael’s College, in VT, in 1992. She worked for IDX Systems Corporation as a computer software installation consultant for healthcare until 1996. She then became a Senior Project Lead for integrated health care delivery system installations. Before becoming a stay-at-home mom in 2001 after the birth of her second child, Reagan, she led web-based software installations on wireless networks, in the outpatient setting for Allscripts. When. From the moment her youngest daughter, Hannah, was diagnosed with GAN in March of 2008, her life has been dedicated to a treatment and cure of GAN and making lasting memories for her family.

 

Joseph G. Hacia, Ph.D.

Director

Joseph is an Associate Professor of Biochemistry and Molecular Biology, Keck School of Medicine, University of Southern California, where he has been on the faculty since 2000. He has been a Guest Researcher, NCATS (National Center for Advancing Translational Sciences), National Institutes of Health, since 2012 and he is also Adjunct Faculty, The Jackson Laboratory, Bar Harbor, Maine. Dr. Hacia has served as a member of the Editorial Board of the journals Genome Research, 2004-2010, Nucleic Acids Research, 2008-2017, BMC Genomics, 2010-present, and BMC Medical Genomics, 2015 – present. He is also currently the Co-Editor of Cells Special Issue: Peroxisomal Disorders: Development of Targeted Therapies. Dr. Hacia is passionate about teaching and is a Chair of Medical Education at the University of Southern California. His current major area of research interest is in the development of targeted therapies for peroxisomal disorders.

Christa Gagnon

Director

Christa has a daughter with GAN. She has been a business owner for 20 years managing staff, finances, customer relations, advertising, and event management. She has spent the last 10 years volunteering her time as a board member for both COCL and Muscular Dystrophy. She lives with her family in Canada.

Kathleen Buckley, MBA

Treasurer

Kathleen is a Certified Public Accountant in the State of New York. She owns both her own accounting firm as well as Three Woods Group LLC, a Real Estate Development company. Kathleen is the mother of a child with Sanfilippo Syndrome, a rare terminal degenerative disease affecting children.

Wade Harper, Ph.D

Director

Wade served as a Professor of Biochemistry and Molecular Biology at Baylor College of Medicine from 1988-2003. He then moved to Harvard Medical School where he has served as the Chairman of the Department of Cell Biology since 2014. Wade has served on the Editorial Board, of Science Signaling, Molecular Cell, Science Advances, and the Board of Reviewing Editors for eLIFE. In 2018, Wade was elected as a member of the American Academy of Arts and Sciences. His laboratory co-discovered cullin-RING ubiquitin ligases and is currently focused on cellular quality control pathways via the ubiquitin system and autophagy.

Amber N. Freed

Director

Amber serves as the Founder and CEO of SLC6A1 Connect. SLC6A1 Connect’s work has elevated awareness and created an ecosystem that can systematically help fund and consolidate research and treatment efforts for SLC6A1 disease. Ms. Freed was featured in the best-selling book, Shortcut to Prosperity, as an example of grit well before her skills were put to the ultimate test. Prior to Founding SLC6A1 Connect, Ms. Freed served in a variety of equity and financial analysis roles, most recently in consumer equity research with Janus Henderson Investors.

Allison T. Moore

President

Allison is a patient and a mother of a son with Charcot-Marie-Tooth (CMT1A). She is a fierce rare disease advocate leading a non-profit with over 20 years of experience as founder and CEO of the Hereditary Neuropathy Foundation (HNF). She has extensive experience working with patients and families affected by Charcot-Marie-Tooth (CMT)/Inherited Neuropathies (IN) and understands the physical and psychological effects of living with a rare disease. She built a robust patient registry, the Global Registry for Inherited Neuropathies (GRIN). Allison has been instrumental in leading the HNF in developing and implementing a patient-led collaborative research network – Therapeutic Research In Accelerated Discovery (TRIAD) with a clear pathway to develop novel strategies to advance therapies for CMT that can ultimately be utilized as a method for other rare diseases.

Katie Hogan

Katie is a patient-focused biotechnology executive offering 20 years of experience across Patient Advocacy, Communications, and Government Affairs disciplines with startup and large-cap organizations. Katie has experience working with patient communities throughout the drug development process from discovery through commercialization.

Lagenia Clark

Director of Development

Lagenia graduated cum laude from Vanderbilt with a degree in Economics in 1990. Immediately upon graduation, she served as an active duty Military Intelligence Officer in the U.S. Army for 3 years (including Desert Storm). After receiving her MBA from Boston University, she worked in medical device sales in Houston until the birth of her twin boys, Jared and Justin in 2000. Since Justin and her daughter Lexi, were diagnosed with GAN in the fall of 2013, Lagenia has not stopped trying to find a cure for GAN. Justin, created the campaign Justin’s TRIumph over GAN, to help spread awareness in the Houston area. Lagenia, along with her husband Dave, lead the fundraising efforts in Texas. Lagenia served as the Team Coordinator for the Houston Texans Kids Triathlon, the largest Kids Triathlon in the world with over 3,000 participants, for 6 years. Lagenia is an avid triathlete and raises money for GAN through her races.

In Loving Memory

Karen Armstrong

Karen, “Auntie,” Armstrong was Hannah’s Hope’s first Treasurer and the loving Aunt of Lori and Hannah Sames.

Karen passed away after a courageous battle with cancer on December 4, 2013.

Prior to her final cancer battle, Karen fought off cancer and sent it to remission multiple times. One of the reasons she gave for continuing her courageous fight was that she “still had more to do for Hannah’s Hope.” She was one of Hannah’s Hope’s most passionate and loving supporters as the charity took flight.

We remember Karen with the deepest love and gratitude and know that she is among the angels watching over and guiding Hannah’s Hope. We honor her memory in our continued courageous and passionate fight against GAN.

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