Chief Guests

Inviting Community Leaders for 4 locations in USA

At Washington DC

Marshall L. Summar, MD – Director: Rare Disease Institute, Childrens National Medical Center, Washington DC; and Chairman, Board of Directors, National Organization for Rare Disorders (NORD)

Dr. Summar to flag off the Racefor7 at Washington, DC location on Feb 24, 2019.

Dr. Summar joined Children’s National in 2010 where he leads the world’s first Rare Disease Institute.    His laboratory works on devices and treatments for patients with rare genetic conditions.  Dr. Summar has also organized and led a number of international work groups to develop standards of care and treatment for rare diseases.   He has been listed with Best Doctor’s in America since 2004. He is the National Organization for Rare Disorders Board Chairman and leads a program  between NORD and the FDA that created a platform for rare disease natural history studies.

Current Leadership Roles:

National Organization for Rare Disorders, Board Chairman (2016-Present)

Society for Inherited Metabolic Disorders, Past-President (2018-Present)

Patient Centered Outcomes Research Institute, Chairman Rare Diseases Advisory Board (2013-2015)

National Urea Cycle Disorders Foundation, Scientific Advisory Board (1994-Present)

Chair, Clinical Advisory Board, Hemoshear Therapeutics (2016-Present)


Vanderbilt University, BS in Molecular Biology, 1981

University of Tennessee Center for Health Sciences, MD, 1985

Vanderbilt University Medical Center, Pediatrics Residency, 1988

Vanderbilt University Medical Center, Genetics Postdoctoral Fellowship, 1990


American Board of Pediatrics

American Board of Medical Genetics both Clinical and Biochemical Genetics

Research and Development:

130+ peer-reviewed publications

25+ funded research projects (NIH, industry, and philanthropy)

100+ International/National invited talks

60+ Issued Patents

Frank J. Sasinowski, M.S., M.P.H., J.D. – Vice Chair, EveryLife Foundation for Rare Diseases

Frank Sasinowski assists sponsors and patient organizations in developing new medicines and has helped secure FDA approval for hundreds of new drugs, including more than 65 new molecular entities, often for serious and/or rare diseases. Frank joined FDA in 1983 as regulatory counsel in the Center for Drugs and Biologics, where he was key to implementing both the 1983 Orphan Drug law and the 1984 Hatch-Waxman law. In 1987, he left the FDA as Deputy Director of the health policy staff in the Commissioner’s office and joined this firm.

In its March 2012 issue, the Drug Information Journal published Frank’s seminal analysis on therapies for rare disorders: “Quantum of Effectiveness Evidence in FDA’s Approval of Orphan Drugs: Cataloging FDA’s Flexibility in Regulating Therapies for Persons with Rare Disorders.”

Other papers on Accelerated Approval and Orphan Drugs are cited by FDA officials as well.

Since December 2014, Frank has been an Adjunct Professor of Neurology at the University of Rochester Medical Center.

Frank’s work has been widely recognized by industry and political leaders, as well as notable organizations. For example, Frank was asked by both political parties to testify at the May 2014 inaugural hearing of Congress 21st Century Cures Initiative.  In August 2018 Frank was appointed to the Board of Directors for the Alliance for Regenerative Medicine Foundation for Cell and Gene Medicine. In May 2013, the National Organization for Rare Disorders (NORD), which represents the 30 million Americans with rare diseases, awarded Frank its first ever NORD Lifetime Achievement Award. In 2000, Frank was elected to NORD’s Board of Directors, where he served as Chair and as Vice Chair, and where he remained on the Board until 2016. In October 2012, President Obama recognized Frank’s contributions to the President’s Council of Advisors on Science and Technology (PCAST) report, “Propelling Innovation in Drug Discovery, Development and Evaluation.” Based on his extensive experience with FDA, from both the agency and client side, Frank possesses a detailed understanding of the regulatory process. He regularly shares his insight on drug development issues with physicians, scientists, and regulators, and has served on the boards of several biotechnology companies. Frank has been Chair of the Food and Nutrition Section of the American Public Health Association (APHA) and has taught health law at American University. Frank has also served on the Board of Directors of the United States Pharmacopeia (USP).

Frank was in the first cohort of the CAC’s Living School, has been on the Board of the Shalem Institute for Spiritual Formation, is on the Board of Sr. Ilia Delio’s Omega Center, was Vice Chair of the Catholic Medical Mission Board, helped organize and lead a spiritual nourishment program for Sr. Simon Campbell’s Network/Nuns on the Bus, started a weekly centering prayer program at his Reston, VA church, and led a non-denominational meditation program at the Northern Virginia Mental Health Institute.

Cynthia Tifft, M.D., Ph.D. – Deputy Clinical Director, Office of the Clinical Director

Dr. Tifft’s clinical and research interests for many years have been lysosomal disorders affecting the central nervous system. She is principal investigator of the largest cohort of patients with GM1 gangliosidosis where she is studying clinical and biochemical markers of disease progression. She has also been a principal investigator in clinical trials of enzyme replacement and small molecule therapies for Gaucher, Pompe and Tay-Sachs diseases.

B.A. University of California, San Diego, 1973
M.S. Rutgers University, 1975
Ph.D. University of Texas, Houston, 1981
M.D. University of Texas, Houston, 1983

Read Biography

Stephen C. Groft, Pharm.D. – Senior Advisor to the Director, National Center for Advancing Translational Sciences (NCATS) National Institutes of Health

Dr.-Stephen-GroftDr. Groft’s current major emphasis at NCATS/NIH is on patient and community engagement in rare diseases research and medical devices as orphan products. Steve served as Director of the Office of Rare Diseases Research (ORDR) at the NIH prior to his retirement in 2014 after 44 years in government service. His major focus for the previous 32 years was on stimulating research with rare diseases and developing information about rare diseases and conditions for researchers, biopharmaceutical industry, healthcare providers, and the public.

At San Francisco Bay Area, CA

BV Jagadeesh – Serial entrepreneur, Angel Investor and a Philanthropist

BV Jagadeesh is Managing Partner at KAAJ Ventures. He has successfully invested and guided companies such as Nutanix (IPO), Yodlee (IPO), Arkin (acqd: VMWare), Elastic Box (acqd: Century Link), NetMagic Solutions (acqd: NTT), Ocarina Networks (acqd: Dell) and Ankeena (acqd: Juniper) to name a few.

Before founding KAAJ, BV Jagadeesh served as a founding investor and CEO of NetScaler. NetScaler pioneered the concept of Application Delivery and was successfully sold to Citrix for $325M and served as Group VP and GM for Citrix’s Application Networking division. Prior to Netscaler, he co-founded and served as CTO of Exodus communications in 1993 that pioneered the concept of Internet data centers. He was instrumental in the successful IPO of Exodus in 1998.

Currently Jagadeesh is an active investor and serves on the board of several SiliconValley StartUPs. He is also an adjunct faculty at the Leavey School of Business, SCU.

Jagadeesh is also very actively involved with several non profits for the betterment of the world such as UVCE Foundation – providing scholarships to deserving students, One School At A Time – Constructs School buildings for the under privileged, Akshaya Patra – providing mid day meals to 1.6 Million children everyday.

At Frisco, TX

Image result for Mayor pro tem shona hoffmanShona Huffman, Mayor Pro Tem, Frisco, TX

Inviting Community Leaders in Dallas Fort Worth area.



At Greenville, SC

Inviting Community Leaders in and around Greenville, SC