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We Are Spark
At Spark Therapeutics, a fully integrated, commercial company committed to discovering, developing and delivering gene therapies, we challenge the inevitability of genetic diseases, including blindness, hemophilia, lysosomal storage disorders and neurodegenerative diseases.
Founded in March 2013 as a result of the technology and know-how accumulated over two decades at Children’s Hospital of Philadelphia (CHOP), our investigational therapies have the potential to provide long-lasting effects, dramatically and positively changing the lives of patients with conditions where no, or only palliative, therapies exist. Greater understanding of the human genome and genetic abnormalities have allowed our scientists to tailor investigational therapies to patients suffering from very specific genetic diseases. This approach holds great promise in developing effective treatments to a host of inherited diseases. Our initial focus is on treating orphan diseases.
Headquartered in dynamic Philadelphia, we are a diverse, experienced team united in our goal to break down barriers for people and families affected by genetic diseases. As our name suggests, our investigational, one-time therapies are designed to spark healthy biology, and deliver potentially life-altering transformation for people and families affected by genetic disease.
Our mission
Challenge the inevitability of genetic disease by discovering, developing and delivering treatments in ways unimaginable – until now.
Our vision
A world where no life is limited by genetic disease.
Meet the Spark corporate management team
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×Stephen Webster
Chief Financial OfficerStephen Webster has nearly 30 years of experience as a financial professional in the life sciences industry. Prior to Spark Therapeutics, Stephen was senior vice president, finance and chief financial officer at Optimer Pharmaceuticals, Inc., a commercial-stage company in the antibiotic field. Before that, he served in the same capacity at Adolor Corporation, a commercial-stage company in the gastrointestinal space. Stephen played an integral role in the sale of both Optimer and Adolor to Cubist Pharmaceuticals, Inc.
Prior to taking his first operating role, Stephen spent 15 years as an investment banker to life sciences companies, raising more than $3 billion in financings and advising clients on more than $3 billion in aggregate mergers and acquisitions value.
Stephen received his A.B. in economics from Dartmouth College and his M.B.A. in finance from The Wharton School of the University of Pennsylvania.
Stephen Webster
Chief Financial Officer -
×Lisa Dalton
Chief People OfficerLisa Dalton has more than 20 years of strategic and operational human resources experience across the biopharmaceutical and financial services industries. She began her tenure at Spark Therapeutics as the Head of Human Resources and after joining the company’s corporate management team, was made Chief Human Resource Officer. In January 2019, Lisa was appointed Chief People Officer and oversees human resources, information technology and corporate facilities. As a core member of Spark’s management team, she has been instrumental in shaping the culture, capabilities, operating model and employee experience during a period of tremendous growth and evolution from a pre-IPO start-up to a fully integrated, commercial gene therapy company.
Lisa was previously vice president, human resources at Shire, where she led various human resources functions to meet the needs of a high-growth organization, including human resources-related merger and acquisition efforts, the total rewards function and the human resources operations function. While on international assignment in Switzerland, Lisa played a critical role in planning and launching Shire’s European hub, where she was a member of the site leadership team, championed the culture and values of the organization and had oversight of the talent strategies for the newly established site.
Lisa also has held roles in human resources with Franklin Templeton Investments, Applied Biosystems and Goldman Sachs.
Lisa holds an M.B.A. from Rutgers University School of Business and a B.A. in psychology from Pennsylvania State University.
Lisa Dalton
Chief People Officer -
×Daniel R. Faga
Chief Business OfficerDan Faga brings more than 15 years of biopharma industry experience to the company. Dan is responsible for Corporate Strategy & Public Affairs at Spark Therapeutics including leadership of the portfolio and new product planning, patient advocacy, business development, alliance management, corporate communications and corporate strategy functions.
Prior to joining Spark Therapeutics, Dan was a managing director at Centerview Partners, where he served as a founding member of Centerview’s healthcare advisory practice. Primarily focused in the life sciences sector, Dan has extensive expertise in corporate strategy, mergers and acquisitions, and partnering, and he has advised on more than $50 billion in biopharma transactions. Prior to Centerview, Dan worked at Merrill Lynch in its healthcare investment banking group and as a management consultant in the life sciences practice at PRTM.
Dan earned a B.S. in engineering from Cornell University and an M.B.A. in healthcare management from the Wharton School of the University of Pennsylvania.
Daniel R. Faga
Chief Business Officer -
×Katherine A. High, M.D.
President and Head of Research and DevelopmentDr. Kathy High, an accomplished hematologist with a longstanding interest in gene therapy for genetic disease, began her career studying the molecular basis of blood coagulation and the development of novel therapeutics for the treatment of bleeding disorders.
Her pioneering bench-to-bedside studies of gene therapy for hemophilia led to a series of studies that characterized the human immune response to adeno-associated viral (AAV) vectors in a variety of target tissues. Kathy’s work has evolved to encompass clinical translation of potential gene therapies for multiple inherited disorders. As the director of the Center for Cellular and Molecular Therapeutics at the Children’s Hospital of Philadelphia (CHOP), Kathy assembled a multidisciplinary team of scientists and researchers working to discover new gene and cell therapies for genetic diseases and to facilitate rapid translation of preclinical discoveries into clinical application.
As president at Spark Therapeutics, she has led the development and received regulatory approval of the first gene therapy for a genetic disease approved in both the U.S. and EU. Spark has shown human proof-of-concept of its leading gene therapy platform in both the retina and the liver, and has received breakthrough therapy designations for three different therapeutics across two different tissue targets, the eye and the liver. In addition to her operational role, Kathy serves as a member of the Board of Directors of Spark.
Kathy was a long-time member of the faculty at the University of Pennsylvania and of the medical staff at CHOP, where she was also an Investigator of the Howard Hughes Medical Institute. She served a five-year term on the FDA Advisory Committee on Cell, Tissue and Gene Therapies and is a past president of the American Society of Gene & Cell Therapy (ASGCT). She received her A.B. in chemistry from Harvard University, an M.D. from the University of North Carolina School of Medicine, a business certification from the University of North Carolina Business School Management Institute for Hospital Administrators and an M.A. from the University of Pennsylvania.
Katherine A. High, M.D.
President and Head of Research and Development -
×Joseph La Barge, J.D.
Chief Legal OfficerJoe serves as the Chief Legal Officer of Spark Therapeutics, Inc., where he oversees legal, compliance, government affairs and pricing and reimbursement. Spark is a fully integrated biotechnology company committed to discovering, developing and delivering gene therapies that challenge the inevitability of genetic diseases, including blindness, hemophilia and neurodegenerative diseases. Spark has received regulatory approval for the first gene therapy approved in both the U.S. and EU, launched the first gene therapy for a genetic disease in the United States, and has established human proof-of-concept of Spark’s gene therapy platform in both the retina and liver.
In his five years at Spark, Joe has led multiple public and private financings, raising more than $1 billion in capital since its founding in 2013 and been instrumental in the development of novel distribution and reimbursement models for one-time therapeutics. Joe currently serves on the Boards of Directors of Life Sciences Pennsylvania and the National Pharmaceutical Council.
Joseph La Barge, J.D.
Chief Legal Officer -
×Jeffrey D. Marrazzo
Chief Executive OfficerJeff Marrazzo has led the creation and growth of Spark Therapeutics from a research center within the Children’s Hospital of Philadelphia to a fully integrated, commercial gene therapy company that is challenging the inevitability of genetic disease by discovering, developing and delivering potential treatments in ways unimaginable – until now. He also serves on Spark’s board of directors.
Under Jeff’s leadership, Spark has received regulatory approval for the first gene therapy for a genetic disease approved in both the U.S. and EU, launched the first gene therapy for a genetic disease in the United States, and has established human proof-of-concept of Spark’s gene therapy platform in both the retina and liver. In the six years since founding Spark, Jeff has secured more than $1 billion in capital and built an organization of more than 400 colleagues. For two years running, Spark has been named to the top 10 of MIT Technology Review’s “50 Smartest Companies”. It’s also been recognized as one of 2018’s most innovative companies in Biotech by Fast Company.
During a career that has spanned the public and private sectors, Jeff has consistently championed the potential benefits of precision medicine and healthcare reform for patients. Prior to Spark, he helped build the first genetic testing benefit management and pharmacogenomics medicines company up to and through the acquisition of a majority of the company’s shares by CVS Caremark. Previously, Jeff served as an advisor to former Pennsylvania Governor Edward G. Rendell, where he led reforms in the financing and delivery of healthcare.
Jeff currently serves as a board member of the Biotechnology Innovation Organization (BIO). Jeff received a B.A. in economics and B.S.E. in systems science and engineering from the University of Pennsylvania. He also holds a dual M.B.A. / M.P.A. from The Wharton School of the University of Pennsylvania and Harvard University, a program which he founded.
Jeff can be found on Twitter @JeffMarrazzo.
Jeffrey D. Marrazzo
Chief Executive Officer -
×Federico Mingozzi, Ph.D.
Chief Scientific OfficerDr. Federico Mingozzi is the chief scientific officer at Spark Therapeutics, bringing two decades of experience in gene therapy, immunology, as well as biochemistry and molecular biology in both industry and academic settings.
Federico began his scientific career studying the genetic bases of bleeding disorders. At the Children’s Hospital Philadelphia (CHOP) he conducted pioneering studies on liver gene transfer with adeno-associated virus (AAV) vectors and immunology. Federico was involved in several first-in-human clinical studies of gene therapy based on the AAV vector platform while serving as the director of translational research the Center for Cellular and Molecular Therapeutics, at CHOP. He also led studies aimed at the characterization of human immune responses to AAV vectors and the development of strategies to modulate vector immunogenicity.
He then joined the French National Institute of Health and Medical Research (INSERM) as Research Director and Genethon, a leading French nonprofit R&D organization focused on gene therapy for rare diseases, as Team Leader. There, he spearheaded the development of in vivo gene therapies for inherited diseases. His work continued to focus on the characterization of human immune responses to AAV vectors and on the development of strategies to overcome immune responses in gene transfer.
Federico currently serves as faculty at the Pierre and Marie Curie University in Paris, France, and Universitat Autonoma de Barcelona, Spain. He received his bachelor’s degree in biology and his Ph.D. in biochemistry and molecular biology from the University of Ferrara in Italy, and his M.B.A. from Drexel University. Throughout his distinguished career, Federico has received several awards and has contributed to more than 90 publications, including seminal findings in the field of AAV gene therapy.
Federico Mingozzi, Ph.D.
Chief Scientific Officer -
×Ron Philip
Chief Commercial OfficerRon Philip is Chief Commercial Officer of Spark Therapeutics and is responsible for leading commercial operations including sales, marketing, diagnostics, market access and patient services functions for inline products. He also manages commercial development activities for Spark’s late-stage pipeline assets. Ron has over 20 years of experience in the pharmaceutical industry with a proven track record of improving operating performance in multiple therapeutic categories and global markets.
Prior to joining Spark Therapeutics, he served in several senior leadership roles at Pfizer including Regional President – Africa Middle East, Head of Global Business Unit Strategy, Head of Business Development Search & Evaluation and Commercial Development within Pfizer’s Innovative Products Business. He previously worked at Wyeth Pharmaceuticals in U.S. commercial operations, with Deloitte Consulting in their strategy and operations practice and at Merck and Co. in the manufacturing and marketing divisions.
Ron is an alumnus of Drexel University.
Ron Philip
Chief Commercial Officer -
×Hari Pujar, Ph.D.
Chief Technology OfficerHari Pujar, Ph.D., serves as Chief Technology Officer of Spark Therapeutics, leading the technical operations, process and technology development and quality assurance organizations. He is responsible for growing and scaling the company’s cutting-edge technology capabilities for an expanding development pipeline.
Prior to joining Spark, Hari was most recently vice president, Technical Development & Manufacturing, at Moderna Therapeutics. There he built and led the technology and early manufacturing organizations that delivered on supply for more than a dozen clinical programs in a brand-new technology area. Previously, he held a variety of scientific and cross-functional leadership positions during 18 years at Merck & Co in the company’s commercial, R&D and manufacturing divisions.
Hari has a Ph.D. in Chemical Engineering from the University of Delaware and an MBA from the Wharton School at the University of Pennsylvania.
Hari Pujar, Ph.D.
Chief Technology Officer -
×Kathleen Reape, M.D.
Chief Medical OfficerKathy Reape is the Chief Medical Officer of Spark Therapeutics and oversees clinical, pharmacovigilance and medical affairs activities. With more than 18 years of pharmaceutical industry experience in clinical drug development, Kathy has overseen numerous clinical trials and had a hands-on role in the approvals of more than two dozen products including small molecules, biologics, biosimilars, and devices spanning a wide range of therapeutic areas.
Prior to joining Spark, Kathy was the president of Ark Medical Consulting LLC where she provided pharmaceutical and medical consulting and the Senior Vice President, Head of Clinical Development, Global Brands R&D for Allergan, plc where she led the Clinical Development function for the entire brand R&D portfolio, including projects in ophthalmology, cardiovascular, gastrointestinal, anti-infectives, respiratory, women’s health, urology, dermatology/aesthetics, and central nervous system (CNS). She also oversaw all development work related to Allergan’s onabotulinumtoxinA (BOTOX®). Kathy has also held leadership positions at Teva Pharmaceuticals, Duramed Research and Wyeth Pharmaceuticals.
She received her M.D. from the University of Pennsylvania and completed her internship and residency at the University of Florida and the University of Medicine and Dentistry of New Jersey.
Kathleen Reape, M.D.
Chief Medical Officer
Industry recognitions
Our commitment to the community
While the investigational gene therapies we are discovering and developing are potentially ground breaking, the enormity of our goal keeps us humble and focused on the lives we hope to change. Patients are our guiding force, and we are honored to be part of their community.
Community to Spark has many meanings:
Sparking A Change in Our Community Through STEM
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As part of its commitment to inspiring the next generation of scientists in Philadelphia, Spark Therapeutics announced a new STEM-focused corporate sponsorship with the Philadelphia-based non-profit, Spark Program in fall 2019.
The Spark Program is a “career exploration and self-discovery program that gives middle school students opportunities to understand, experience and pursue what’s possible for their future.” Each year, the program engages 400 middle school students in Philadelphia in research-based programming designed to build critical skills and increase awareness of career possibilities.
Spark Therapeutics’ sponsorship gives 10 students access to yearlong programming in STEM career exploration, skill-building, and one-on-one mentorship.
“The Spark Program mirrors our dedication to exploration in STEM,” said Monique da Silva, head of corporate communications at Spark Therapeutics. “Together, we can create the path to bright futures in STEM careers for young Philadelphians and help ensure that the future workforce of this city has the skills and hands-on experience to be part of the exciting, growing career opportunities in biotechnology.”
Learn more about the sponsorship here and watch the video to hear from Spark Program Executive Director Deirdre Hake about how the sponsorship will advance career exploration for future biotech leaders right here in Philadelphia.
Team Spark Champions the Patient at Local Walks
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At Spark, we are committed to creating a world where no life is limited by genetic disease – a vision that not only touches our scientific efforts, but also our community engagement activities here in our home of Philadelphia.
In fall 2019, Spark team members, family and friends again laced up their sneakers and walked alongside the local Philadelphia community at two walks sponsored by Spark: The Foundation Fighting Blindness’ (FFB) annual Philadelphia VisionWalk and the Eastern PA Chapter of the National Hemophilia Foundation’s (NHF) annual Trick or Trot Family Walk.
On October 5th, friends, families and allies of the Foundation Fighting Blindness (FFB), a nonprofit organization focused on research for preventing and treating blindness caused by inherited retinal diseases, once again headed to Philadelphia’s Independence Hall to participate in FFB’s annual Philadelphia VisionWalk. As has been the case in previous years, close to 50 members of Team Spark and their family members gathered in one of Philadelphia’s most historic settings to support FFB as they continue to raise funds for sight-saving research.
For the second straight year, the Eastern PA Chapter of the National Hemophilia Foundation’s annual Trick or Trot Family Walk took place at the Philadelphia Zoo. On October 13, approximately 70 members of Team Spark and their family walked together, many donning costumes, to raise awareness of hemophilia and associated research in order to further build upon our connection with the local hemophilia community – all the while admiring a destination that is home to close to 1,300 animals. As attendees registered, Laureen Temple, senior patient advocacy and community outreach specialist, showcased advancements in gene therapy science through an interactive, hemophilia-focused education booth.
To learn more about Spark’s advocacy activities, visit https://sparktx.com/patients-families/. Information on our community engagement work in inherited retinal diseases and hemophilia can be accessed at www.asharedvision.com and www.hemophiliaforward.com, respectively.
Spark Sponsors Believe Limited’s First-Ever Science Fair for the Hemophilia Community at 2019 National Hemophilia Foundation’s Bleeding Disorders Conference
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In fall 2019, Team Spark headed to Anaheim, California for the 71st Bleeding Disorders Conference, a signature event from the National Hemophilia Foundation aimed at bringing the hemophilia community together. Spark was a Founding Sponsor of The Science Fair™, a hands-on, immersive exhibit at the Conference that sought to educate children and adults with hemophilia, as well as other attendees, about the science behind bleeding disorders.
More than 800 attendees affected by bleeding disorders participated in activities that comprised the Fair, which was developed with input from a scientific advisory panel of key clinicians, who guided educational messaging for each of the interactive modules, as well as community members who contributed to the final program. Believe Limited intends to share modules of the Science Fair at future scientific and community meetings.
In a press release announcing the sponsorship from April, Spark President and Head of R&D, Dr. Kathy High noted that the Fair “aims to spark the community’s curiosity to understand the underlying science of their disease, so they feel empowered to ask the right questions and make informed decisions related to their medical care.”
Open more community stories
A Super Summer Sequel: Spark to Sponsor Summer Movie Nights Again
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Summer! It’s the time for sunny days, ice cream, music festivals and fun-filled movie nights! And because Team Spark is always up for some fun and likes to support a good cause, Spark is, once again, sponsoring the Schuylkill Banks Movie Nights.
As proud West Philadelphia citizens, we’re thrilled that our sponsorship of this event provides continued support of the Schuylkill River Development Corporation (SDRC). The SRDC is a local non-profit that focuses its efforts on the revitalization of the Schuylkill River Corridor, spanning from the Fairmount Dam to the Delaware River.
“As the leading gene therapy company founded six years ago right here in Philadelphia, Spark Therapeutics is proud to give back to the local community by sponsoring another edition of the Schuylkill Banks Movie Series,” said Jeffrey D. Marrazzo, chief executive officer, Spark Therapeutics. “Outdoor movie nights offer a novel way to bring the hard-working Philadelphia community together around a leisurely activity.”
The movies will be featured on large screens set up along the Schuylkill Banks. Different movies will be featured on Thursday nights throughout the summer at both the Walnut Street Bridge as well as the Grays Ferry Crescent by Wharton Street. The movies begin at dusk and are open and free to the public.
Bring your family and friends and arrive early to grab a good spot before the show begins!
For more information about the Schuylkill River Development Corporation, please visit: https://www.schuylkillbanks.org/
Movie Nights at Walnut Street:
June 13: Romancing the Stone
June 27: Fantastic Mr. Fox
July 25: Sing
August 8: Crazy Rich Asians
August 22: A League of Their Own
Movie Nights at Grays Ferry Crescent:
June 20: The Karate Kid (1984 version)
July 18: Robin Hood (Disney 1973 version)
August 1: Green Book
August 15: Captain Marvel
Spark Gives Back to Philadelphia Community Schools
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Most inner-city public-school classrooms still do not have enough working computers and most students don’t have one at home, either.
Recently, Spark Therapeutics took steps to bridge this divide by donating 55 gently used laptops to the Philadelphia Children’s Foundation (PCF), a non-profit group providing internet-ready computers to classrooms and publicly accessible locations. In addition to providing technology to classrooms, PCF also helps to outfit school libraries with books, provides computers to low-income families that do not have them or access to one, as well as teach 3D printing classes. Spark’s donation provides students with computers and technology to use in their classrooms.
Principals, teachers, and students at schools supported by PCF foundation report an overall improvement in math and reading performance as a result of being able to access web-based “Intervention Tools” (websites) during class.
As a company founded and located in Philadelphia, we are proud to make this laptop donation for use by select local students. For more information on the charity, please visit Phillykids.org.
Highlights from Rare Disease Week at Spark
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In honor of Rare Disease Day on February 28th, dozens at Spark Therapeutics donned stripes, tested their rare disease knowledge and gathered in-person and virtually to learn directly from those living the rare disease journey as part of Spark’s Rare Disease Week celebration.
The week kicked-off on Tuesday Feb. 26, with a special Lunch & Learn presentation from Rob Long, Executive Director of Uplifting Athletes. Rob shared his experience being diagnosed with a rare form of brain cancer, and his journey from college football star to rare disease advocate. In the process, he spoke about the strength and resilience necessary to navigate life with a rare condition and inspired employees with the unique mission and impressive accomplishments of his three-person strong organization. To learn more about Uplifting Athletes, visit https://www.upliftingathletes.org/.
On Wednesday, employees gathered across all Philadelphia office locations wearing striped clothing and accessories in support of NORD’S Show Your Stripes campaign to represent the zebra, the rare disease community mascot.
On Thursday—officially Rare Disease Day—Spark held an all-employee event to hear from Rachel Foster, who lives with Pompe disease. Rachel shared her early signs and symptoms, barriers to getting an accurate diagnosis, experiences participating in clinical trials and how she draws inspiration from her friends, husband, and daughter.
Samantha Willner, Patient Advocacy at Spark Therapeutics, sits down with Rachel Foster, a person who is living with Pompe disease.
Finally, Spark wrapped up the week on Friday with some Rare Disease Trivia, where employees’ answered questions such as, “How did Pompe disease get its name?” (A: The name comes from the Dutch pathologist J.C. Pompe, who first described an infant with the disease) and “How many rare diseases are caused by a gene mutation?” (A: 8 in 10)
Spark is always looking for ways to Champion the Patient, and we were honored to celebrate Rare Disease Day with a week-long celebration of patients.
Walking in support of the Eastern Pennsylvania Chapter of the National Hemophilia Foundation
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Walking in support of the Eastern Pennsylvania
Walking in support of the Eastern Pennsylvania
Chapter of the National Hemophilia Foundation
Spark Therapeutics is proud to be a part of the patient communities we serve and our local community in Philadelphia where we are headquartered.
In October 2018, we proudly participated in two events in one weekend! Joining the local Philadelphia community, Team Spark participated in one walk to benefit research and support for retinal degenerative diseases and one walk to support the local hemophilia community.
On October 6, friends, families and allies of the Foundation Fighting Blindness (FFB), a nonprofit organization focused on research for preventing and treating blindness caused by inherited retinal diseases filled Philadelphia’s Independence Hall (famously where the United States Declaration of Independence and the United States Constitution were adopted) to participate in FFB’s annual Philadelphia VisionWalk. The Spark team, which numbered more than 40, sported their new Spark Cares shirts to show support to the community.
Team Spark also participated in the Eastern PA Chapter of the National Hemophilia Foundation’s annual Trick or Trot Family Walk on October 7. For the first time in its history, the event was held at the Philadelphia Zoo, where more than 50 Spark team members and their children, many in costume, gathered to celebrate the community spirit, raise awareness of hemophilia and associated research and build our connection with the local hemophilia community.
To learn more about Spark’s advocacy and community engagement work in inherited retinal diseases and hemophilia, visit www.asharedvision.com and www.hemophiliaforward.com, respectively.
Future Ready: Engaging Philadelphia Youth as they Explore STEM Career Paths
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Future Ready: Engaging Philadelphia Youth as they Explore STEM Career Paths
In June Spark Therapeutics participated in The Chamber of Commerce for Greater Philadelphia’s Future Ready program for the second year in a row. As part of the program, Spark hosted sixth-grade school students from Dr. Ethel Allen elementary school in Philadelphia.
The program is designed to enlighten and inspire students about future career paths and opportunities in STEM industries by providing them with hands-on immersion at local Philadelphia companies. To date, 700 students have participated in the program.
During their visit, students dressed as Spark scientists and toured labs while learning about different aspects of Spark’s work – from the science behind life-changing medicines, to what it means to engage a patient community. Students experienced first-hand the inspiration for Spark’s work in inherited retinal diseases by trying virtual reality goggles that simulated what living with an IRD can be like. The visit concluded with a Q&A session with our CEO, Jeff Marrazzo, who shared some fun tidbits about Spark’s founding from the company name (easy to say and remember) to why Spark’s ‘official color’ is green (hint: think Philadelphia Eagles circa 1980s).
Learn more about the Future Ready program here: https://chamberphl.com/signature-events/future-ready/
Spark welcomes Pompe disease advocates on Rare Disease Day 2018
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Celebrating Rare Disease Day at Spark Therapeutics
Rare Disease Day (RDD) is commemorated annually on the last day of February to raise awareness globally for rare diseases, rare disease research and the daily impact rare diseases have on patients, families and caregivers. In 2018, the Spark team took our RDD activities to a new level, reaffirming our commitment to championing the patient and celebrating their stories.
Spark welcomed rare disease advocates Kendall Davis and Matthew Crowley to Spark HQ, and employees gathered to hear their stories and mission. Kendall is a director of Global Genes, a patient advocacy organization committed to connect empower and inspire the global rare disease community. She spoke about the organization’s efforts to empower patients to advocate for their health and shared eye-opening information about rare diseases such as the fact that more than 350 million people worldwide are affected by so-called ‘rare’ diseases, due to the sheer number of genetically-driven conditions. Matthew Crowley, a father of two daughters living with Pompe disease, shared the personal challenges facing those impacted by rare diseases, the diagnostic journey and emphasized the importance of strength through family.
To commemorate the day, Spark also launched Rare Disease Lending Libraries at our Philadelphia offices, filled with books sharing the diverse stories of those affected by rare diseases and unveiled a mural decorated with employees’ thoughts and feelings in response to our “Champion the Patient” vision.
To learn more about the long history of research breakthroughs in rare disease, check out #ResearchSparksInvention on Twitter.
Celebrating Foundation Fighting Blindness’ Work in the Community and The Illumination
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Celebrating Foundation Fighting Blindness’ Work in the Community and The Illumination
In November 2017, Spark Therapeutics welcomed the Foundation Fighting Blindness (FFB) to host an exclusive screening of The Illumination, a powerful documentary chronicling the origin of the FFB, its founders and its quest to help create a new field in vision science, one that is seeking to deliver on the real promise of restored vision. The Illumination is a joint project of The Nantucket Project and the FFB. The documentary has been shown at film festivals across the country and has earned festival honors at numerous events.
Spark employees and special FFB guests from around the world were able to view the screening and interact with the film’s creators. The inspirational event featured a version of the film with audio narration to simulate the experience of a visually impaired audience. Among other invited guests from the FFB, Gordon Gund and his wife Lulie, founders of FFB, along with Tom Scott, the film’s director, spoke on an interactive panel following the screening.
Walking with Foundation Fighting Blindness and the Eastern Pennsylvania Chapter of the NHF
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Walking with Foundation Fighting Blindness and the Eastern Pennsylvania Chapter of the NHF
Spark Therapeutics is proud to be a part of the patient communities we serve and our local community in Philadelphia where we are headquartered.
In October 2018, we proudly participated in two events in one weekend! Joining the local Philadelphia community, Team Spark participated in one walk to benefit research and support for retinal degenerative diseases and one walk to support the local hemophilia community.
On October 6, friends, families and allies of the Foundation Fighting Blindness (FFB), a nonprofit organization focused on research for preventing and treating blindness caused by inherited retinal diseases filled Philadelphia’s Independence Hall (famously where the United States Declaration of Independence and the United States Constitution were adopted) to participate in FFB’s annual Philadelphia VisionWalk. The Spark team, which numbered more than 40, sported their new Spark Cares shirts to show support to the community.
Team Spark also participated in the Eastern PA Chapter of the National Hemophilia Foundation’s annual Trick or Trot Family Walk on October 7. For the first time in its history, the event was held at the Philadelphia Zoo, where more than 50 Spark team members and their children, many in costume, gathered to celebrate the community spirit, raise awareness of hemophilia and associated research and build our connection with the local hemophilia community.
To learn more about Spark’s advocacy and community engagement work in inherited retinal diseases and hemophilia, visit www.asharedvision.com and www.hemophiliaforward.com, respectively.
Raising awareness at the 2017 National Hemophilia Foundation Annual Meeting
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Raising awareness at the 2017 National Hemophilia Foundation Annual Meeting
Members of Spark Therapeutics’ patient advocacy and medical affairs teams attended the National Hemophilia Foundation’s Annual Meeting in Chicago, IL, in August 2017. This event brings together members of the hemophilia community from across the country to participate in educational sessions and networking opportunities.
As an exhibit hall sponsor, Spark had the opportunity to meaningfully engage in conversations with members of the hemophilia community. Spark’s team shared educational resources. “We were thrilled to see large attendance at sessions on current research for new potential treatments for hemophilia, including gene therapy,” said Tessa Field, Patient Advocacy lead at Spark.
Walking in support of the New England Hemophilia Association
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Walking in support of the New England Hemophilia Association
The Spark Therapeutics team joined more than 1,500 participants at the New England Hemophilia Association’s (NEHA) 8th Annual Hemophilia Walk near Boston, on a sunny Saturday in June 2017. The theme of this year’s walk was “Everyday Heroes” and marked NEHA’s 60th anniversary serving the community. Congratulations to NEHA and the community for a truly record breaking event! Spark Therapeutics is proud to be part of the bleeding disorders community and to help raise awareness.
Future Ready: Engaging Philadelphia youth as they explore STEM career paths
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Future Ready: Engaging Philadelphia youth as they explore STEM career paths
As part of The Chamber of Commerce for Greater Philadelphia’s Future Ready program, Spark Therapeutics hosted sixth graders from Middle Years Alternative School for the Humanities in West Philadelphia in June 2017. The program, designed to prepare students for successful careers in local industries, focuses on developing skills such as resume building, goal setting, interviewing and financial literacy.
During their visit, students learned about different aspects of the Spark Therapeutics team’s work – from the science behind medicines under development, to patient advocacy. Students tried virtual reality goggles to experience what living with an inherited retinal disease may be like, and navigated through a mini obstacle course while wearing goggles that simulated specific vision impairments. Throughout the visit, students were shown how a career in STEM can impact their greater community as they continue along the path to join the next generation of young professionals.
Learn more about the Future Ready program here: http://chamberphl.com/futureready/
Bringing nonprofit advocates together at the ARVO Annual Meeting
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Bringing nonprofit advocates together at the ARVO Annual Meeting
The Spark Patient Advocacy Team (two members pictured above) hosted its second annual advocacy networking reception with Foundation Fighting Blindness (FFB) during the Association for Research in Vision and Ophthalmology (ARVO) 2017 Annual Meeting in Baltimore. This event brings together nonprofit advocates working in the blinding disorders community from around the world to network.
“Foundation Fighting Blindness was pleased to partner again this year with Spark Therapeutics for this special advocates reception at ARVO. This event provided a forum for members of our community to meet and talk with each other, face to face, about our shared mission to raise awareness about blinding disorders,” said Dr. Brian Mansfield, Deputy Chief Research Officer at FFB.
More than 25 people attended, including members of the Spark team, FFB leadership and representatives from several patient advocacy organizations, including the Foundation Fighting Blindness Canada, Fighting Blindness Ireland, BrightFocus Foundation, The Glaucoma Foundation, Choroideremia Research Foundation, Curing Retinal Blindness Foundation and the National Alliance for Eye and Vision Research.
“Lighting It Up Red” in celebration of World Hemophilia Day
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“Lighting It Up Red” in celebration of World Hemophilia Day
To recognize World Hemophilia Day 2017, the FMC Tower and Cira Centre in downtown Philadelphia were lit up in red as part of the World Federation of Hemophilia’s annual “Light It Up Red” campaign. As part of the campaign, more than 40 landmarks around the world were lit up in red to show support for the global bleeding disorders community.
Spark Therapeutics is proud to partner with this community and to help create visibility for people living with bleeding disorders.
Learn more about World Hemophilia Day and the “Light It Up Red” initiative here: https://www.wfh.org/en/whd
“Hearing Their Voices” on World Hemophilia Day at Spark Therapeutics
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“Hearing Their Voices” on World Hemophilia Day at Spark Therapeutics
One of the World Federation for Hemophilia’s World Hemophilia Day 2017 initiatives was the “Hear Their Voices” campaign, which was geared toward showing support for the many women and girls around the world affected by bleeding disorders.
The Spark Therapeutics team welcomed Dawn Rotellini, Senior Vice President Program Development of the National Hemophilia Foundation, and Kimberly Haugstad, President and CEO of the Hemophilia Federation of America. Both women are parents of sons with hemophilia and shared with us the story of their inspirational journeys – from the diagnostic journey, to being parents of children with hemophilia, and ultimately, to becoming advocates for the greater bleeding disorders community.
Visit the Hemophilia Federation of America’s website at www.hemophiliafed.org and the National Hemophilia Foundation’s website at www.hemophilia.org for more resources and information about bleeding disorders.
Raising awareness about bleeding disorders through the Red Tie Challenge
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Raising awareness about bleeding disorders through the Red Tie Challenge
To promote Bleeding Disorders Awareness Month during March 2017, the National Hemophilia Foundation (NHF) sponsored its annual Red Tie Challenge, which aims to advance the fight against inheritable bleeding disorders by raising funds for research, education and advocacy.
Spark team members Kathy High, Lauren Kaskiel and Tessa Field — joined by Curt Krouse, president of the Eastern Philadelphia branch of the NHF — donned their red ties to show their support.
Find out more about the Red Tie Challenge at http://redtiechallenge.donordrive.com/.
Advocating for the LHON community
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Advocating for the LHON community
In 2008, when Lissa Poincenot’s son suddenly went blind at age 19 and was diagnosed with Leber hereditary optic neuropathy, or LHON, she set out looking for information and answers. Finding no centralized disease community, Lissa became determined to gather as much information as she could about LHON, a rare mitochondrial disease that can cause the optic nerve to atrophy, leading to sudden, severe loss of central vision. She has played an instrumental role in creating a resource about LHON by developing a community of patients, caregivers, doctors and researchers that did not exist for her family when her son was diagnosed.
“When we bring people with LHON together, there is an immediate sense of family because of our shared experiences. I am trying to make the path smoother for families facing this disease,” Lissa said. “I’m also doing all I can to connect with Spark and companies trying to help from a medical point of view, working on potential treatments.”
We at Spark Therapeutics applaud Lissa for the valuable contributions she has made to the LHON community around the world. Visit Lissa’s LHON community resource at www.lhon.org.
Recognizing Rare Disease Day at Spark Therapeutics
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Recognizing Rare Disease Day at Spark Therapeutics
Rare Disease Day is traditionally held on the last day of February every year to raise awareness of rare diseases. In celebration of Rare Disease Day 2017, Spark Therapeutics employees gathered to hear from an inspirational panel of members from our patient family community. Laura Manfre, one of the panelists, shared her journey of becoming an advocate for the blind after learning that her daughter, Sofia, was diagnosed with Leber congenital amaurosis (LCA), an inherited retinal disease (IRD), with a defect on the IQCB1 gene.
“I co-founded a non-profit, 501C3, organization called Sofia Sees Hope. It is inspired by my daughter, but our hope is really to bring awareness of inherited retinal disease and LCA, and then really pull together the LCA and inherited retinal disease community. The only way you really have a clear diagnosis of LCA is to know your gene(s). So, the very first step is getting tested. The more we can pull together and drive awareness of the importance of genetic testing and research, the better—hopefully—it will be,” Laura said.
Find out more about Laura’s story at aSharedVision, and check out www.rarediseaseday.org to learn about Rare Disease Day around the world.
Lead Sponsor of Foundation Fighting Blindness’ Annual Philadelphia and Boston VisionWalks
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Lead Sponsor of Foundation Fighting Blindness’ Annual Philadelphia and Boston VisionWalks
Spark Therapeutics employees were out in full force for the 10th Annual Philadelphia VisionWalk on Saturday, October 8, 2016, and the 9th Annual Boston VisionWalk on Saturday, November 5, 2016. We are proud to support Foundation Fighting Blindness’ mission to drive research for a spectrum of retinal degenerative diseases.
Supporting Fighting Blindness Ireland’s Annual Retina Conference
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Supporting Fighting Blindness Ireland’s Annual Retina Conference
Spark Therapeutics participated in the 2016 Retina Conference, an annual event organized by the Irish patient-led charity Fighting Blindness. The aim of the conference, which includes a scientific program and a public engagement day, is to bring together eminent figures in the global effort to find treatments for conditions causing sight loss. The event facilitates networking between Irish and international colleagues, leading to future collaborations and catalyzing the next generation of vision research.
Meet Spark the Guide Dog
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Meet Spark the Guide Dog
Spark Therapeutics is proud to support “Spark” on his journey to becoming a highly qualified guide dog. We are partnering with Guide Dogs for the Blind (GDB), an industry-leading guide dog school, to support Spark’s training. Spark’s journey began on GDB’s San Rafael, California, campus, and at eight weeks of age, he was placed with a volunteer family for the start of his training. We are pulling for Spark as he advances through his training program in hopes of proving himself ready to be partnered with an individual who is blind or visually impaired. GDB receives no government funding and provides all their services free of charge. We are proud to support their life-changing mission. Learn more about this organization at guidedogs.com.
Spark Therapeutics, Inc.
3737 Market Street
Philadelphia, PA 19104
Phone: 1-855-SPARKTX / +1 215-220-9300
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