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Being a parent of a child with a rare and incurable disease can be daunting. There is a constant feeling of frustration and lack of control. Most times we loose hope in the future…
We are mostly a group of parents and grandparents who have traveled the uncommon but empowering journey of developing new treatments for their own children. We want to share our experience to support other parents who want to take direct control and drive the sciences to develop cures for their children.
Daniel is an executive with extensive expertise in developing new businesses and assisting companies in achieving sustainable growth. Daniel co-founded Intellimedix in 2012 to develop a more efficient approach to finding cures for rare genetic diseases. Daniel’s primary goal was to repurpose FDA approved drugs to treat a severe type of genetic epilepsy called Dravet Syndrome which affects his 5 year old daughter Natasha.
Daniel has been a management consultant with several top-tier consultancies including A.T. Kearney, Arthur D. Little and Zyman Group (with ex-Coca Cola CMO, Sergio Zyman). Daniel has a proven track record as an entrepreneur. In 2000 he founded and managed Comerxia, a company that provided US online retailers with a platform for international cross-border ecommerce. The company’s largest single shareholder is UPS. Comerxia was featured in TIME magazine as the leading solution for international cross-border ecommerce.
Daniel graduated from The Wharton School’s Executive Education Program, holds an MBA from IESA and a BSEE from Simon Bolivar University and the University of Tel Aviv.
Daniel lives in Atlanta with his wife Karina and four children, Jonathan, David, Nicole and Natasha.
Robert K. Coughlin
As President and CEO of the Massachusetts Biotechnology Council, Bob’s mission is to foster a positive environment that enables each biotechnology company to achieve its full potential in Massachusetts, making the state a world center for biotechnology. He is very familiar with all areas of the Massachusetts life sciences super cluster and is a passionate advocate for research and the biotechnology community.
Bob has spent his career in both the public and private sectors, prior to his position at MassBio he served as the Undersecretary of Economic Development within Governor Deval Patrick’s administration. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. In the legislature both healthcare and economic development were his priorities.
In the world of business he specialized in the environmental services industry and moved on to capital management and venture capital. He has held senior executive positions in both fields
He is a graduate of the Massachusetts Maritime Academy where he majored in Marine Engineering, and is a Lieutenant in the United States Naval Reserve.
Bob has also been active in the community; he is a past board member of the Massachusetts Maritime Academy and Beth Israel Deaconess Hospital. He is currently serving on the board of directors for The Schwartz Center for Compassionate Healthcare, The Boston Irish Business Association and Aridis Pharmaceuticals. He serves as the honorary chairman of the Great Strides Cystic Fibrosis Walk since 1996. In years past, he co-chaired the Children’s Hospital Boston signature event, Champions for Children’s and the Schwartz Center’s Compassionate Healthcare Dinner. In 2011, the American Diabetes Association honored Bob with their Father of the Year Award. In 2012, the Cystic Fibrosis Foundation honored Bob with the CF Foundation Volunteer Leadership Award and in 2013; he received the Boston Irish Business Award from the Boston Irish Business Association.
Bob has a son Bobby who suffers from Cystic Fibrosis.
Harvey Lodish, PhD
A Founding Member of Whitehead Institute, Lodish joined the MIT faculty in 1968. He has been a professor of biology since 1976 and professor of bioengineering since 1999. He earned his PhD at Rockefeller University in 1966. He was elected a fellow of the American Association for the Advancement of Science in 1986, a member of the National Academy of Sciences in 1987, and a fellow of the American Academy of Arts and Sciences in 1999. He is a member of the Board of Trustees of Boston Children’s Hospital, and is Chair of the Scientific Advisory Board of the Massachusetts Life Sciences Center, charged with oversight of the state’s 10- year, $1 billion investment in the life sciences. He is also the lead author of the textbook Molecular Cell Biology.
Dr. Lodish was a founder and scientific advisory board member of Genzyme, Inc., Arris Pharmaceuticals, Inc, Millennium Pharmaceuticals, Inc, and Allozyne, Inc. He has served on the Scientific Advisory Board for the Eisai Research Institute in Massachusetts and on the Scientific Advisory Board of Astra and then AstraZeneca Pharmaceuticals.
In his days at Genzyme Dr. Lodish was instrumental in the development of Cerezyme, a drug that today is used to treat his grandchild Andrew who suffers from Gaucher.
A leader in the fields of cellular and developmental biology, Harvey F. Lodish has isolated, cloned, and characterized numerous proteins and noncoding RNAs that play key roles in formation of blood and fat cells and that regulate metabolism of glucose and fatty acids. His results have important implications for the treatment of anemias, cancer, diabetes, heart disease, and obesity.
In 1988, the Lodish laboratory accomplished pioneering work on erythropoietin (Epo), a hormone that controls the production of red blood cells. The lab identified and cloned the Epo receptor, leading to a lengthy set of ongoing projects on the activation of, and signal transduction by, the erythropoietin receptor in erythroid progenitor cells and the regulation of transcription, apoptosis, and cell division. The lab is currently characterizing many novel genes that are important for terminal stages of erythropoiesis, including chromatin condensation and enucleation. Other work focuses on the regulation of self- renewal, proliferation, and differentiation of early (BFU-E) erythroid progenitor cells by extracellular signals including glucocorticoids and oxygen. One goal is the development of novel therapies for erythropoietin-resistant anemias.
The lab recently discovered several microRNAs and Long Non-coding RNAs that are specifically expressed in developing red blood cells and that regulate important aspects of development including cell death. One microRNA causes leukemias when overexpressed in human or mouse stem cells.
James (Jim) Jacoby is founder, chairman, and CEO of The Jacoby Group, a synergistic group of operating companies headquartered in Atlanta, GA. These companies, whose common goals revolve around sustaining the environment while giving back to the community, operate in the industries of sustainable real estate development, renewable energy, health sciences, media, and the environment.
In 2012 Jim co-founded Intellimedix to find better treatments for Dravet Syndrome, a rare type of genetic epilepsy that affects his daughter Julie.
In 2001 Jim acquired the aging Marineland Florida dolphin attraction in 2001 and related real estate in and redeveloped the entire park to a modern dolphin facility focused on education and and providing dolphin interaction opportunities for children with special needs.
Jim Jacoby launched his entrepreneurial career almost 40 years ago with Jacoby Development, Inc. (JDI), originally focused on retail shopping center development. During the next decade, Mr. Jacoby, a native of South Florida who has always been sensitive to environmental issues, recognized that there was a better way to approach real estate development. The Atlantic Station development in Atlanta is an example of his forward thinking in this area and exemplifies his eco-friendly, investor-builder approach to site remediation and reuse. Mr. Jacoby is an active member of the International Council of Shopping Centers and the Urban Land Institute. He is a founding Board Member of the Georgia Aquarium and currently serves on the boards of Guy Harvey’s Marine Science Center, the Savannah College of Art and Design, the Epilepsy Therapy Project, and the Hawaii Health Foundation.
Jim is currently developing the Atlanta Media Campus & Studios is a mixed-use development anchored by the largest film and television media complex outside of California. Jim is also developing the Porsche North America headquarters in Atlanta and the One Daytona complex in partnership with International Speedway Corporation.
Michelle Welborn, PharmD
Michelle holds a Doctor of Pharmacy degree from Campbell University School of Pharmacy. She serves as President of MWelborn Group, LLC, a pharmaceutical consulting firm that provides regulatory consulting for companies internationally who are seeking marketing approval for products and devices for rare disease from the FDA, EMA, or Health Canada. Michelle has 18 years experience in the pharmaceutical industry as a liaison in Medical and Regulatory Affairs for both Astra-Merck and Sanofi –Aventis Pharmaceuticals, as Clinical Pharmacy Manager for a Health Maintenance Organization (HMO) , and as a Pharmacy Practice resident at Wake Forest University Baptist Medical Center. She has an insightful perspective on intractable childhood epilepsy, rare diseases, pharmaceuticals, and the unmet need for drug development and a cure for epilepsy. Her passion and energy to drive research for determining the cause of and curing intractable childhood epilepsy and Dravet syndrome is due to her daughter, Lilly, who is 10 years old and suffers from Dravet syndrome.
Michelle has the unique perspective of a health care professional and parent advocate, and has represented children with orphan diseases, intractable epilepsy and Dravet syndrome across the world in various meetings and congresses. She has participated in workshops and consortiums organized by the NIH (National Institutes of Health), the National Organization of Rare Diseases (NORD), the International Congress of Rare Diseases (ICORD), and the Centers for Disease Control (CDC), the Epilepsy Foundation of America, and the Australian Dravet syndrome Family Day. She currently serves as member of the NINDS Anticonvulsant Screening Program Working group, a Working Group for the Improvement of Care for Children with Dravet Syndrome, and the Professional Advisory Boards for the Charlie Foundation and Lennox-Gastaut Syndrome Foundation. Michelle also serves on the Board of Directors for Twin City Stage, Winston-Salem, NC.