Archives for July 2016

Throughout the month of July and August, Redbox has teamed up with 7-11. With the purchase of a Big Gulp, you will score a free movie rental!  Simple as that- quench your thirst and watch a flick for free.

And in August, you can reserve rentals to automatically be entered to win a $500 Visa gift card…every day of the month! Someone will win each day! Now, how cool is that?

Go to redbox.com/deals!

Credit: Redbox and 7-11.

Global Genes is pleased to announce the 2016 award recipients who will be honored at the 5th Annual Tribute to Champions of Hope (Tribute) presented by PRA Health Sciences and during a special ceremony following the RARE Patient Advocacy Summit (Summit). These highly anticipated events will take place September 22-24, 2016 at the Hyatt Regency Huntington Beach Resort and Spa in Huntington Beach, CA. Global Genes is proud to introduce this year’s Henri Termeer Lifetime Achievement Award Honoree to be presented on Saturday, September 24th as part of the RARE Champion of Hope Awards.

The Henri Termeer Lifetime Achievement Award will be presented at this year’s Tribute event to Honoree Philip Reilly, MD, JD – an individual who has been a champion for patients throughout his career.  “Phil Reilly is a champion of patients.  He is deeply focused on the potential of science to create hope for patients.  He is a leader at this time of true progress in the rare disease field,” commented Henri Termeer, Former President & CEO of Genzyme Corporation.

Reilly earned his board certification in internal medicine and clinical genetics, his law degree, served as Executive Director of the Eunice Kennedy Shriver Center for Mental Retardation, held faculty positions at Harvard Medical School and Brandeis University, is an accomplished author, and has an extensive track record in launching and building companies that develop innovative therapies for rare disease.

“Phil embodies the spirit of the Henri Termeer Lifetime Achievement Award,” added Betsy Bogard, FOP Patient Advocate. “His commitment to understanding and addressing rare genetic diseases is unwavering. He possesses a unique ability to bring the forces of science and business to bear on the problems of rare diseases, always keeping patients and families front and center. He is relentless in the search for meaningful treatments and has brought hope and compassion to countless families.”

In addition to his role at Third Rock Ventures, Reilly is a trustee emeritus of Cornell University, an Overseer of Weill Cornell Medical College, and serves on the Advisory Board to the Boston University School of Public Health.

The Henri Termeer Lifetime Achievement Award was created & named in Mr. Termeer’s honor because of his focus and commitment to patients that began over 25 years ago.  Mr. Termeer is a pioneer in biotech, and has committed an entire career to impacting patients with rare disease.  He has been a mentor to many, has developed best practices that have been integrated into most of the successful biotech’s, and has inspired almost all that have worked with or for him.   “Henri is someone who all of us in rare disease aspire to be like, stated Nicole Boice, Founder and CEO Global Genes.  “In fact, this award also epitomizes the spirit of all the Champion of Hope award honorees.  All of those being recognized have similar qualities; courage, focus, tenacity, inspiration, they are game changers and innovators.”

Over 350 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. From the extraordinary list of nominees, members from the Global Genes Board of Directors, Medical and Science Advisory Board, and other key partners selected the recipients to be honored at the 5th annual Tribute event.

Global Genes would like to congratulate the following 2016 RARE Champion ofHope award recipients to be honored at the Tribute to Champions of Hope on Saturday, September 24:

RARE Champion of Hope and Henri Termeer Lifetime Achievement Award – Philip Reilly, M.D., J.D., Author

RARE Champion of Hope – Sam and Alex Kimura, Founders, Sharing America’s Marrow (SAM)

This year’s esteemed honorees will be recognized at a special awards ceremony on Friday, September 23. Honorees include RAREChampion(s) of Hope in:

Advocacy: Gina Szajnuk, Co-Founder & Executive Director, Rare & Undiagnosed Network

Advocacy: Emily Kramer-Golinkoff, Co-Founder, Emily’s Entourage

International Advocacy: Elisabeth Linton, The Sanafilippo Children’s Research Foundation

Teen Advocacy: Peter Dankelson, #ChooseKIND Advocate, Children’s Craniofacial Association

Medical Care and Treatment: Dr. Elif Oral (FPLD), Assoc. Prof of Medicine

Director, Post-Bariatric Surgery Clinic, Division of Endocrinology and Metabolism

Brehm Center for Diabetes Department of Internal Medicine University of Michigan

Medical Care and Treatment International: Chancellor Dr. Carmencita Padailla, Philippine Society for Orphan Disorder

Science: Dr. Anne Calof, Ph.D., Professor, Dept. of Anatomy & Neurobiology, Developmental & Cell Biology, and the Center for Complex Biological Systems, University of California, Irvine and Dr. Arthur D. Lander, M.D., Ph.D., Donald Bren Professor of Developmental and Cell Biology. Director, Center for Complex Biological Systems, University of California, Irvine

Science International: Dr. Illana Gozes, Professor, The Lily and Avraham Gildor Chair, Director, Adams Super Center for Brain Studies
Collaborations in Advocacy: Kelly Ranallo, Founder/President, Turner Syndrome Global Alliance and RARE KC

Collaborations in Science and Technology: Dr. Steven Walkley, Dr. Daniel Ory, Dr. Charles Vite, Dr. Cristin Davidson, Hide and Seek Foundation for Lysosomal Disease Research, Dana’s Angels Research Trust, Race for Adam, Hadley Hope, Fight NPC (SOAR-NPC)

Proceeds from the evening will benefit Global Genes’ educational programs and the RARE Patient Impact Grant Program, which was launched at last year’s Tribute. Global Genes is pleased to also welcome PRA Health Sciences as the presenting sponsor for the 2016 Tribute to Champions of Hope.

Presenting sponsor: PRA Health Sciences

To date the events’ sponsors include: Platinum Sponsors: Alexion Pharmaceuticals, Horizon Pharma, Genentech, Pfizer and Walgreens.  Additional sponsorships provided by:  Retrophin, Raptor, Genzyme, Amicus, Shire, Healthcare at Home, Novartis, Vertex, BioMarin, Mallinckrodt, Recordati Rare Disease, Inc, Biogen Idec, Teva Pharmaceuticals, Abeona Therapeutics, Chiasma Pharmaceuticals, Ambry Genetics, Akcea Therapeutics, Bluebird Bio, Janssen, Sigma Tau, Cambridge BioMarketing, Alnylam, Dohmen Life Sciences Services, BIO, Glaxo Smith Kline (GSK), Jazz Pharmaceuticals,IDIS, Marathon Pharmaceutical, Third Rock Ventures, Voyager Therapeutics, RegenxBio, Illumina and Ultragenyx.

It is not too late to become an event sponsor. To learn more about Global Genes and event sponsorship opportunities, visit www.globalgenes.org/events.

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About Global Genes
Global Genes is a leading rare genetic disease advocacy organization. We work to eliminate rare disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes is dedicated to connection. We unite experts, advocates and patients of all ages. Together, we actively seek treatments and cures for the 7,000+ rare genetic diseases that affect 30 million Americans and over 350 million people worldwide.

About PRA Health Sciences
PRA is one of the world’s leading global contract research organizations, by revenue, providing outsourced clinical development services to the biotechnology and pharmaceutical industries. PRA’s global clinical development platform includes approximately 70 offices across North America, Europe, Asia, Latin America, South Africa, Australia, and the Middle East, and 12,000+ employees worldwide. Since 2000, PRA has performed approximately 3,300 clinical trials globally and has worked on more than 100 marketed drugs across several therapeutic areas. In addition, PRA has participated in the pivotal or supportive trials that led to U.S. Food and Drug Administration or international regulatory approval of more than 60 drugs. To learn more about PRA, please visit www.prahs.com.