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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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Mission: The Corporate Advisory Council (CAC), through its collective industry expertise, serves as a resource to NTSAD to advance its research agenda and position itself as an attractive partner to industry.

Role: The Council advises NTSAD about its efforts to direct, fund and promote the development of treatments and cures for the NTSAD family of diseases. It will counsel NTSAD in expanding its evolving partnership model, recommend research strategies and assist NTSAD in leveraging its full range of capabilities.

For more info, read the January 2015 Press Release. 

Corporate Advisory Council (CAC) Members

Oved Amitay is Vice President and Head of Commercial at Alnylam Pharmaceuticals. Before joining Alnylam in 2012, Oved was VP for Strategic Development for the Personalized Genetic Health business unit at Genzyme, where he also led the internal research and development activities for their rare disease business. Oved joined Genzyme in 1998 and held positions in regulatory affairs, medical marketing, market development, and business development in Europe and the Middle East.  Oved graduated from the School of Pharmacy in the Hebrew University in Jerusalem, and completed his graduate studies in Pharmacology at Northeastern University.

Ritu Baral is a managing director and senior biotechnology analyst at Cowen & Company. Before that, she was an analyst at Canaccord Genuity as Senior Research Associate in Biotechnology. She has a wide range of experience in biotechnology finance, including over 3 years in biotechnology equity research. Previously, Ritu was biotechnology equity research associate at JMP Securities and before that was a Senior Associate at the Trout Group, a biotechnology focused investor relations agency. Ritu graduated with a B.A. in Biological Sciences from Barnard College.

Laura Cohen is a team leader at Health Advances, a strategy consulting firm. At Health Advances, she focuses on corporate strategy and new product commercialization for biopharma clients. Prior to joining Health Advances, Laura worked within the Patient Advocacy group at Amicus Therapeutics, where she was fortunate enough to meet and work with some of the strong and beautiful families living with orphan diseases. She hopes her involvement in NTSAD will result in her applying her new product commercialization expertise to bring new products to the families who need them most. Laura graduated from Rutgers University, where she earned her B.S. in Public Health and Biology. 

Michael Gladstone is an associate in the life sciences group at Atlas Venture (Biotech venture capital fund focused on new company creation). Prior to joining Atlas in 2012, Michael was a senior associate consultant in the life sciences practice at L.E.K. Consulting, where he focused on business development and corporate strategy for biopharma clients.  While at L.E.K., Michael also served as head of client development for Inspire, a volunteer consulting firm staffed by junior consultants.  Steve Rosner, former NTSAD board member and an LEK partner, introduced Mike and Inspire to NTSAD.  Mike was part of pro bono strategic consulting projects for NTSAD. Michael received a BS in biochemical sciences with highest honors from Harvard College, where he graduated magna cum laude and was awarded the Harvard College Scholarship. 

John Gordon is a partner and CFO at Putnam Associates. He first got involved with NTSAD in 2005, after being inspired by a close friend who has two children with another lysosomal storage disease. Upon joining the Board, John led NTSAD’s strategic planning process, and has continued to be part of strategy development since then. He looks forward to advising NTSAD about advancing their research based on his knowledge gained working in biotech and pharma consulting.

Kate Haviland recently joined Blueprint Medicines. Prior to that, she worked at Idera Pharmaceuticals as Vice President of Rare Diseases.  Previously she was Head of Commercial Development at Sarepta Therapeutics, a company focused on developing therapeutics to treat rare genetic disorders and infectious diseases. Kate's responsibilities included marketing, patient advocacy relations, global access/reimbursement, medical education and commercial operations. Kate also worked at PTC Therapeutics, a company focused on orphan drug development in rare genetic diseases, and at Genzyme in Corporate Development and Marketing. Kate has a BA from Wesleyan University with a double major in Biochemistry and Economics, and an MBA from Harvard Business School.  Kate was inspired to work in the field of genetics and to connect with NTSAD through her late uncle, Dr. David Rimoin, who was a pioneering physician and researcher in the field of medical genetics.

Greg Licholai, MD, is the President and Chief Scientific Officer at Castle Creek Pharmaceuticals. Before that, he served as VP & General Manager of Spotlight, a McKinsey Solutions Company, which is a proprietary information and analytics company providing software as a service for healthcare industry. Greg is both an entrepreneur and executive in the biopharmaceutical industry. He was Chief Operating Officer at Proteostasis, a private biotechnology company in Cambridge, MA.  Earlier, he had been one of the first employees at Amicus Therapeutics where he was Vice President of Medical Affairs. He was a Howard Hughes Medical Institute Research Scholar at the National Institutes of Health. Greg received his B.S. from Boston College and Pre-Medical studies at Columbia University, his M.D. from Yale Medical School and his M.B.A. from Harvard Business School. Greg was on NTSAD’s Scientific Advisory Committee before transitioning to the Corporate Advisory Council.

Joan Keutzer is the Vice President of Scientific Affairs at Genzyme Corporation which she joined in 1995. Joan has been involved in the development of therapies for MPS I, Fabry disease, and Pompe disease, including initiating efforts in developing newborn screening assays for the lysosomal storage diseases (LSDs), patient monitoring assays, and an improved diagnostic assay for Pompe disease. In 2003, she established the LSD diagnosis, monitoring and screening group in Genzyme R&D to focus on translating published research methods into protocols for use in clinical and newborn screening labs. She received her Ph.D. in cellular and molecular biology from the University of Kentucky, School of Biological Sciences, and her B.S from Northern Kentucky University.

Walt Kowtoniuk joined Fulcrum after serving as a senior associate at Third Rock Ventures where he led the creation of Fulcrum. Walt joined Third Rock in 2013 to focus on new company formation in the rare genetic disease space. While at Third Rock he also supported the partner development team and contributed to the formation of multiple new companies focused on delivering transformative medicines to patients. Prior to joining Third Rock, Walt was a manager at Clarion Healthcare, a boutique strategy consulting firm in the life sciences industry. At Clarion, Walt focused on developing new business strategies and providing commercial insight into early product development in the rare disease space. He has also worked with pre-commercial companies to build and prepare the organization for product commercialization. Walt has a Ph.D. in chemical biology from Harvard University and a B.S. in biochemistry, molecular biology and philosophy from Gettysburg College.

 

NTSAD's Family and Restricted Funds are allocated for specific uses such as research, education and family services. Families honor their loved ones by raising funds for a specific purpose.

Creating a Restricted Fund - Set up a fund under NTSAD to avoid the costs of time and money to set-up a separate 501(c)(3) with the IRS. We can handle the administration of the fund from processing gifts, generating thank you letters and annual reporting to the IRS. Please contact Sue Kahn or (617) 277-4463 for more information if you and your family are interested in setting up a fund.

National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. We focus on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease.

Today, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support.  NTSAD gives help and hope to thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by Tay-Sachs, Canavan and related genetic diseases all over the world.

The programs and services offered include:

Family Services

NTSAD provides comprehensive support services to affected families and individuals through its Peer Support Group (PSG). NTSAD links about 500 parents, grandparents, extended family, affected adults and their families and caregivers to each other via a confidential network. Other services available to PSG members include an Annual Family Conference, PSG directory, quarterly newsletters, and materials and support for fundraising and awareness events.

Research

NTSAD's goals are to direct, fund and promote research to develop treatments and cures.  Working with its Scientific Advisory Committee, NTSAD identifies promising therapeutic approaches to fund through the Research Initiative grant program.

Education

NTSAD offers educational and awareness programs directly as well as through collaborations with chapters, affiliates and other community partners.

Advocacy

NTSAD advocates for families and persons of all ages with disabilities on an individual, state and national level as requested on issues such as health insurance coverage and government (supplemental) funding.

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Mission

The mission of the National Tay-Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.

Vision

We will accomplish our mission by funding global cutting edge research, by helping to provide families with compassionate care and support and by collaborating effectively with the healthcare community to achieve our goals.

The National Tay-Sachs & Allied Diseases Association will:

  • Direct, fund and promote research to develop treatments and cures
  • Provide comprehensive support services to affected families and individuals
  • Guide prevention, education, awareness and screening through effective grassroots collaborations with chapters and affiliates
  • Lead advocacy efforts as the recognized authority for this family of genetic diseases

The related genetic diseases include over 50 lysosomal storage diseases and over 40 leukodystrophies.

President

Blyth Lord

Vice President

Staci Kallish, DO

Treasurer

Alex Wright

Secretary

Ruth Feldman

Directors

Merle Adelman
Stewart Altman
Risa Asnen
Monica Gettleman
Karen Grinzaid
Scott Hunger
William Johnson, PhD
Meryl Kallish
Edna Kaplan
Amy Katz, Esq.
Oralea Marquardt
Sophia Pesotchinsky
Kevin Romer
Alec Rubenstein
Amy Speak
Shari Ungerleider
Marion Yanovsky

Past Presidents

Brian Manning
Shari Ungerleider
Kevin Romer
Thomas P. Lord
Bradley L. Campbell
John F. Crowley, JD
Mark P. Madsen
Daniel N. Turner, Esq.
Meredith R. Margolis, PhD
Yvonne Sacks
Daniel Greenberg, Esq.
Sedra Schiffman
Steven Laver, Esq.*
Jayne Mackta
Judith Saperstein
Claire Kahn
Evelyn Sussman*
Ruth Dunkell*

* deceased

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