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# Lumos Pharma

Our Focus Is Rare Disease

## Sitemaps

- [XML Sitemap](https://lumos-pharma.com/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [News](https://lumos-pharma.com/news/)
- [JP Morgan 2024 activity](https://lumos-pharma.com/jp-morgan-2024-activity/) - Lumos Pharma participating in LifeSci Corporate Access Event Jan 9-10, 2024. For more information: Contact ir@lumos-pharma.com
- [NewLink Genetics and Lumos Pharma Enter into Merger Agreement to Form Biopharmaceutical Company Focused on Developing Therapies to Treat Rare Diseases](https://lumos-pharma.com/newlink-genetics-and-lumos-pharma-enter-into-merger-agreement-to-form-biopharmaceutical-company-focused-on-developing-therapies-to-treat-rare-diseases/) - -- Combined company to assume the name, Lumos Pharma, Inc. and is expected to be led by Richard J. Hawkins, current CEO of Lumos Pharma -- -- Lumos asset, LUM-201, represents first oral therapeutic candidate for pediatric growth hormone deficiency (PGHD) with planned Phase 2b expected to begin in mid-2020 -- -- Lumos Pharma stockholders,
- [Transferring Sponsorship of a Clinical Study: A lesson on how rare disease drug developers can work together for the good of an underserved rare disease community](https://lumos-pharma.com/transferring-sponsorship-of-a-clinical-study-a-lesson-on-how-rare-disease-drug-developers-can-work-together-for-the-good-of-an-underserved-rare-disease-community/) - On June 20th, 2019, wonderful news was announced on the Association for Creatine Deficiencies’ (ACD) website and ACD Facebook page that Lumos Pharma has transferred the sponsorship role of the Vigilan Study (Observational Study of Creatine Transporter Deficiency-CTD) to Ultragenyx Pharmaceutical Company. https://creatineinfo.org/wp-content/uploads/2019/06/Vigilan-Update-June-20-2019-Transfer-ACD-Letter.pdf “The ongoing natural history study, Vigilan, is crucial for the
- [IT’S RARE DISEASE DAY AND WE ARE ADVANCING CTD KNOWLEDGE!](https://lumos-pharma.com/its-rare-disease-day-and-ctd-knowledge-is-being-further-advanced/) - By Carol A. Dutch – Senior Director, Patient Engagement, Lumos Pharma More than two years ago, a multidisciplinary team of investigators based primarily at Children’s Hospital of Philadelphia (CHOP) set out to advance the scientific and medical community’s understanding of a rare pediatric neurodevelopmental disorder called Creatine Transporter Deficiency (CTD/SLC6A8), first identified in 2001. Their work culminates
- [10 CTD Study Sites Now Open](https://lumos-pharma.com/ctd-observational-study-sites-now-open/) - The Vigilan Study - Observational Study of Creatine Transporter Deficiency (CTD) of Males, now has ten study sites open for patient enrollment. Males with CTD will be screened at university clinics. Once enrolled in the study, participants will undergo a series of age-appropriate tests of physical and intellectual abilities. Follow-up testing will occur every 6
- [Lumos Pharma Acquires Candidate for Oral Treatment of Growth Hormone Deficiency](https://lumos-pharma.com/lumos-pharma-acquires-candidate-for-oral-treatment-of-growth-hormone-deficiency/) - Lumos Pharma, Inc., a clinical stage biopharmaceutical company focused on development and commercialization of therapeutics for rare and neglected diseases, today announced that it has acquired the license for LUM-201, an investigational orally administered small molecule that promotes secretion of growth hormone from the pituitary gland, from Ammonett Pharma LLC. Lumos plans to initiate a
- [The RareChildNeuro 75% Fact](https://lumos-pharma.com/the-rarechildneuro-75-fact/) - By Carol A. Dutch - Senior Director, Patient Engagement, Lumos Pharma Thanks to the human genome project, thousands of diseases and disorders have been identified and most of these can be characterized as rare and inherited. Facts like “There are over 7000 rare diseases identified” and “There are more than 350 million people in the world living with
- [Two new Vigilan sites open at Duke and Rush](https://lumos-pharma.com/new-vigilan-ctd-observational-study-sites-open-at-duke-and-rush/) - Duke University Medical Center in Durham, North Carolina and Rush University Medical Center in Chicago, Illinois are now recruiting individuals to participate in a two-year prospective observational study of males with Creatine Transporter Deficiency (CTD), named the Vigilan Study. Dwight Koerberl, MD, PhD is the principal investigator (PI) at Duke University, and Elizabeth Berry-Kravis, MD,
- [Lumos Pharma Celebrates Worldwide Rare Disease Day with “Screen Creatine NOW!” Video](https://lumos-pharma.com/lumos-pharma-celebrates-worldwide-rare-disease-day-with-screen-creatine-now-video/) - One in ten individuals are living with a rare disease. On the last day of February every year, hundreds of patient organizations from more than 80 countries conduct awareness-raising activities to celebrate Rare Disease Day. In honor of the 10th annual Rare Disease Day, Lumos Pharma has created the below video “Screen Creatine NOW!” in
- [Lumos Pharma launches ScreenCreatine.org Disease Awareness Website](https://lumos-pharma.com/lumos-pharma-launches-screencreatine-org-disease-awareness-website/) - Austin, Texas - March 15, 2017 ScreenCreatine Project: Disease awareness website launched to expand understanding and resources associated with Cerebral Creatine Deficiency Syndromes (CCDS) including Creatine Transporter Deficiency (CTD) Today, Lumos Pharma launches the disease awareness website ScreenCreatine.org, part of the ScreenCreatine Project. ScreenCreatine.org was developed to provide health literate information about the three creatine
- [The Lumos Team supports CCDS Awareness Day!](https://lumos-pharma.com/the-lumos-team-supports-ccds-awareness-day-thank-you-association-for-creatine-deficiencies-acd-for-organizing-this-day/) - The Lumos Team supports CCDS Awareness Day. Thank you Association for Creatine Deficiencies - ACD - for organizing this day!
- [LUMOS PHARMA APPOINTS CAROL A. DUTCH AS SENIOR DIRECTOR, PATIENT ENGAGEMENT](https://lumos-pharma.com/lumos-pharma-appoints-carol-a-dutch-as-senior-director-patient-engagement/) - Austin, Texas – June 21, 2016 – Lumos Pharma, Inc. has further expanded its management team with the appointment of Carol A. Dutch as Senior Director, Patient Engagement. Ms. Dutch will create and lead global patient engagement projects to support the clinical development and pre-commercial phases of Lumos’ rare and orphan disease pipeline projects. Over
- [ACD Exhibit Booth at ACMG](https://lumos-pharma.com/acd-exhibit-booth-at-acmg/) - Austin, Texas – April 28, 2016 – ACD Exhibit Booth at ACMG The 2016 American College of Medical Genetics (ACMG) Conference was held in Tampa, Florida March 9-11. The ACD attended with an exhibit booth to help raise awareness of CCDS. The conference was well attended by geneticists from all over the world as well
- [Lumos Pharma Appoints John C. McKew, Ph.D.  Chief Scientific Officer](https://lumos-pharma.com/lumos-pharma-appoints-john-c-mckew-ph-d-chief-scientific-officer/) - Austin, Texas - April 20, 2016 - Lumos Pharma, Inc. a clinical stage biotechnology company focused on bringing novel therapies to patients with unmet medical needs in severe, rare, and genetic diseases, announced that John C. McKew, Ph.D. has joined the company as its Chief Scientific Officer. “John is one of the most well-known and
- [Lumos Pharma Raises $34 Million in Series B Financing](https://lumos-pharma.com/lumos-pharma-raises-34-million-in-series-b-financing/) - AUSTIN, Texas – April 6, 2016 - Lumos Pharma, a biotechnology company focused on developing therapeutics for orphan diseases, announced the successful completion of a $34 million Series B financing. Lumos will use the proceeds for clinical trials and commercialization of its lead compound, LUM-001, for the treatment of Creatine Transporter Deficiency (CTD). Funding will
- [Lumos Pharma Appoints David M. Weiner, M.D. as  Chief Medical Officer](https://lumos-pharma.com/lumos-pharma-appoints-david-m-weiner-m-d-as-chief-medical-officer/) - Austin, Texas - April 13, 2016 - Lumos Pharma, Inc., a biotechnology company focused on bringing novel therapies to patients with unmet medical needs in severe, rare, and genetic diseases, announced that David M. Weiner, M.D. has joined the company as its Chief Medical Officer. "Dave’s accomplishments in the pharmaceutical industry and extensive clinical experience
- [Lumos Pharma Announces Series A Financing](https://lumos-pharma.com/lumos-pharma-announces-series-a-financing/) - AUSTIN, Texas - February 4th, 2014 – Lumos Pharma, an early stage biopharmaceutical development company, announced today that it has raised $14 million in Series A financing. The round was co-led by Santé Ventures and New Enterprise Associates (NEA). Lumos Pharma will use the financing to support the preclinical and clinical development of its lead
- [Lumos Pharma Receives Wellcome Trust Award for Advancing Potental Treatment of Creatine Transporter Deficiency (CTD)](https://lumos-pharma.com/lumos-pharma-receives-wellcome-trust-award-for-advancing-potental-treatment-of-creatine-transporter-deficiency-ctd/) - AUSTIN, Texas - May 4th, 2015 - Lumos Pharma, Inc. (Austin, Texas) announced today that it has received an award of up to $5.5 million from the Translation Fund of the Wellcome Trust. CEO of Lumos Pharma, Richard Hawkins, stated “We are very pleased Wellcome Trust has selected Lumos for an award and we are privileged
- [Lumos joins Association for Creatine Deficiencies in Kyle for Local Rare Disease Day Event](https://lumos-pharma.com/lumos-joins-association-for-creatine-deficiencies-in-kyle-for-local-rare-disease-day-event/) - Lumos joins Association for Creatine Deficiencies in Kyle for local Rare Disease Day Event
- [National Institutes of Health Creates Six New Projects as Part of Therapeutics for Rare and Neglected Diseases (TRND) program.](https://lumos-pharma.com/national-institutes-of-health/) - AUSTIN, Texas - July 12th, 2014 Researchers will begin drug development projects for rare and neglected diseases that include potential treatments for a musculoskeletal disorder, a cognitive dysfunction disorder, a virus that affects the central nervous system of newborns, a parasitic worm infection, a form of muscular dystrophy and a rare lung disease. The six

## Pages

- [Home](https://lumos-pharma.com/)
- [Benefits](https://lumos-pharma.com/benefits/)
- [Partnerships and Collaborations](https://lumos-pharma.com/collaborations/) - COLLABORATE WITH US At Lumos Pharma, we believe that partnerships and collaborations are key to our everyday operations and valuable to our goal of developing therapeutics for rare diseases. We are actively seeking to expand our portfolio through acquisitions and in-licensing of pre-clinical and clinical-stage therapeutic candidates from others in the rare disease industry. Through
- [Growth Deficiencies](https://lumos-pharma.com/growth-deficiencies/) - When children aren’t growing properly, it may be an indication of a treatable medical condition Here are some rare diseases that are characterized by abnormal growth: PGHD (Pediatric Growth Hormone Deficiency) Turner Syndrome SGA (Small for Gestational Age) CAH (Congenital Adrenal Hyperplasia) ONH/SOD (Optic Nerve Hypoplasia / Septo Optic Dysplasia) Hypothyroidism RSS (Russell Silver Syndrome)
- [News Signup](https://lumos-pharma.com/newsletter-signup/) - Subscribe to receive news from Lumos Pharma To subscribe, please provide your email address below.
- [Presentations & Publications](https://lumos-pharma.com/presentations-publications/)
- [Culture](https://lumos-pharma.com/culture/)
- [Jobs](https://lumos-pharma.com/jobs/)
- [LUM-201](https://lumos-pharma.com/our-pipeline/lum-201/)
- [Compassionate Use](https://lumos-pharma.com/compassionate-use-policy/) - Expanded Access/Compassionate Use Lumos Pharma is a clinical-stage biopharmaceutical company committed to identifying, developing and commercializing life-changing therapies for patients and families living with rare diseases. Our pipeline features development programs in rare diseases associated with growth hormone deficiencies. We also maintain legacy product candidates that were designed to harness multiple components of the immune
- [Advocacy and Patients](https://lumos-pharma.com/advocacy/)
- [Focus On Rare](https://lumos-pharma.com/our-pipeline/)
- [OraGrowtH Trials](https://lumos-pharma.com/clinicaltrials/)
- [Our Company](https://lumos-pharma.com/our-company/) - COMPANY OVERVIEW Lumos Pharma is a clinical-stage biopharmaceutical company whose mission is to develop new therapies for people with rare diseases, prioritizing its focus where the medical need is high, and the pathophysiology is clear. We are committed to this mission and a strategy that is grounded upon time and cost-efficient drug development to deliver safe
- [Privacy Policy](https://lumos-pharma.com/privacy-policy/) - About This Site Lumos Pharma, Inc. (“we” or “Lumos Pharma”), along with its subsidiaries, is the controller and responsible for your personal data. As such, we respect your privacy and commit to protecting it through our compliance with data privacy laws and regulations, including but not limited to US state and Federal data privacy laws
- [Resources](https://lumos-pharma.com/resources/) - COMPANY OVERVIEW Lumos Pharma is a clinical-stage biopharmaceutical company whose mission is to develop new therapies for people with rare diseases, prioritizing its focus where the medical need is high, and the pathophysiology is clear. We are committed to this mission and a strategy that is grounded upon time and cost-efficient drug development to deliver safe
- [Terms of Use](https://lumos-pharma.com/terms-of-use/) - Welcome to the Lumos Pharma, Inc. (“LUMOS”) website. The information provided on this site is for general informational and educational purposes only. Please read and review these Terms of Use carefully before accessing or using this website. By accessing or using this site, you acknowledge that you have read, understood and agreed to these Terms
- [Contact](https://lumos-pharma.com/contact/)
- [Sample](https://lumos-pharma.com/sample/)
- [Our Team](https://lumos-pharma.com/our-company/our-team/)
- [New Modular Page](https://lumos-pharma.com/new-modular-page/)
- [Other Programs](https://lumos-pharma.com/other-programs/)
- [For Patients](https://lumos-pharma.com/resources/for-patients/)
- [Site Map](https://lumos-pharma.com/site-map/) - Site Map Homepage Last updated: 2015, July 27 lumos/ 1 pages Lumos Pharma | Creatine Transporter Deficiency | Creatine Disorder 2015/ 07/ 1 pages July | 2015 | Lumos Pharma 23/ altera-diceret-albucius-nec/ 1 pages Altera diceret albucius nec | Lumos Pharma autem-debet-dissentiet-at-pri/ 1 pages Autem debet dissentiet at pri | Lumos Pharma vel-ferri-habeo/ 1 pages

## Team Members

- [Dave Schrader](https://lumos-pharma.com/company/dave-schrader/) - Dave Schrader is the Vice President, Quality and Compliance of Lumos Pharma. He brings twenty years of experience holding various quality and compliance roles throughout his career in the pharmaceutical industry. Prior to the merger with Lumos Pharma, he held various roles of increasing responsibility in the quality department at NewLink Genetics. As part of
- [Aleksandra K. Bruchey](https://lumos-pharma.com/company/aleksandra-k-bruchey/) - Dr. Bruchey is an academically trained neuroscientist with over 25 years of expertise in development of biopharmaceuticals and devices in the areas of neurology, metabolic diseases, psychiatry, rare diseases, and endocrinology among others, with leadership roles in all facets of therapeutic candidate development from pre-clinical to Phase IV trials. Dr. Bruchey also has broad regulatory
- [Brad Powers](https://lumos-pharma.com/company/brad-powers/) - Brad Powers is the Chief Compliance Officer and General Counsel of Lumos Pharma. Prior to the merger with Lumos Pharma, he served as General Counsel at NewLink Genetics where he was directly responsible for all legal matters including corporate transactions, risk management, intellectual property, compliance, regulatory affairs, human resources, quality assurance and business development activities.
- [Lori Lawley](https://lumos-pharma.com/company/lori-lawley/) - Lori Lawley is Chief Financial Officer of Lumos Pharma. She brings over ten years of experience and accounting expertise in overseeing financial operations, including over five years of public company senior management experience in biotechnology. Prior to the merger with Lumos Pharma, she held various senior roles of increasing responsibility in NewLink’s finance department, including
- [Roy Smith](https://lumos-pharma.com/company/roy-smith/) - Dr. Roy Smith is Scientific Advisor, Endocrine Science of Lumos Pharma. He has more than fifty years of academic and industrial research experience focused on drug discovery with over 300 peer-reviewed publications and issued patents. Upon receiving his Ph.D. in organic chemistry from Queen Mary College, London University, UK., Roy crossed the pond to take
- [Michael O. Thorner](https://lumos-pharma.com/company/michael-o-thorner/) - Michael Thorner is Vice President, Endocrine Sciences of Lumos Pharma. Dr. Thorner most recently was Chair of the Department of Medicine and preceding that was Chief of the Division of Endocrinology and Metabolism and Director of the Clinical Research Center at the University of Virginia. He was responsible for building the Pituitary Program and led
- [Mark Bach](https://lumos-pharma.com/company/mark-bach/) - Dr. Bach is a pediatric endocrinologist with 30 years of clinical research and pharmaceutical development experience, including extensive global experience building and leading clinical teams that have successfully launched innovative pharmaceutical products into global markets. Dr. Bach is currently Chief Medical Officer at ShouTi. At his last position, Dr. Bach served as Senior Vice President
- [Campbell Murray, M.D.](https://lumos-pharma.com/company/campbell-murray-m-d/) - Dr. Campbell Murray is a seasoned biotech investor, operator, and physician with over two decades of experience in venture capital, biotechnology leadership, and clinical medicine. As Co-Founder and Managing Partner of Double Point Ventures, he leads investments in breakthrough life sciences companies, shaping their trajectory from inception through clinical development, regulatory approvals, and commercial success.
- [Daniel Yadegar, M.D.](https://lumos-pharma.com/company/daniel-yadegar-m-d/) - Dr. Daniel Yadegar is a recognized leader at the intersection of healthcare, biotechnology, and life sciences. As Co-Founder and Managing Partner of Double Point Ventures, he focuses on identifying and accelerating transformative early-stage biotech companies, with a particular emphasis on life extension, regenerative medicine, cardiovascular health, and reproductive medicine. Prior to founding Double Point Ventures,
- [Chris Uzpen](https://lumos-pharma.com/company/chris-uzpen/) - Mr. Uzpen has spent over 25 years practicing law, including as a partner at an international law firm where he served as co-head of its family office practice. He is a tax law specialist by training but has spent the past 10 years advising on and managing all aspects of investment and business matters. Mr.
- [John C. McKew](https://lumos-pharma.com/company/john-c-mckew-ph-d/) - John McKew is President and Chief Scientific Officer of Lumos Pharma. Dr. McKew has twenty-seven years of experience developing novel therapeutics where he successfully advanced therapies through preclinical and into clinical development. Prior to Lumos Pharma, Dr. McKew served as V.P. of research at aTyr Pharma where he led a research team discovering and advancing
- [Senior VP CMC & Supply Management](https://lumos-pharma.com/company/senior-vp-cmc-supply-management/) - Alpa Parikh is Senior Vice President, CMC & Supply Management at Lumos Pharma. Ms. Parikh has over 30 years of experience in branded drug pharmaceutical development, from preclinical through commercialization of a new molecule. In her current role, she manages drug substance-drug product development, manufacturing, and the clinical supply chain for our lead drug candidate.
- [Alpa Parikh](https://lumos-pharma.com/company/alpa-parikh/) - Alpa Parikh is Senior Vice President, CMC & Supply Management at Lumos Pharma. Ms. Parikh has over 30 years of experience in branded drug pharmaceutical development, from preclinical through commercialization of a new molecule. In her current role, she manages drug substance-drug product development, manufacturing, and the clinical supply chain for our lead drug candidate.
- [Pisit “Duke” Pitukcheewanont](https://lumos-pharma.com/company/pisit-duke-pitukcheewanont/) - Dr. Pisit "Duke" Pitukcheewanont is Lumos Pharma's Chief Medical Officer. A seasoned pediatric endocrinologist with over 25 years of combined clinical expertise and research contributions in the field, he currently serves as Adjunct Professor of Clinical Pediatrics at the Children’s Hospital of Los Angeles, Keck School of Medicine of the University of Southern California, and
- [Reiko Horikawa](https://lumos-pharma.com/company/reiko-horikowa/) - Dr. Horikawa, a pediatric endocrinologist, is the Director of the Endocrinology and Metabolism Division of the Japanese National Center for Child Health and Development (NCCHD) and has been with the NCCHD since 2002. She is the author of over 300 original, peer-reviewed endocrinology articles (174 English/152 Japanese) and has contributed to 43 book publications. Dr.
- [Ron Rosenfeld](https://lumos-pharma.com/company/ron-rosenfeld-m-d/) - Dr. Rosenfeld serves as Professor and Chair (emeritus) of Pediatrics, Oregon Health & Science University in addition to his role as President of STAT5, LLC. The author of over 600 publications and eight-edited books, Rosenfeld is an internationally renowned authority on the endocrine basis of growth and development and has been at the forefront of
- [George Werther](https://lumos-pharma.com/company/george-werther-m-d-ph-d/) - Professor George Werther, a pediatric endocrinologist, is Director of the Centre for Hormone Research at Murdoch Children’s Research Institute and Director of Endocrinology at the Royal Children's Hospital (RCH) in Melbourne. Werther has been involved in clinical and basic research on growth and development for about 30 years, focusing on growth hormone (GH) and the
- [Peter Clayton](https://lumos-pharma.com/company/peter-clayton-m-d-ph-d/) - Dr. Clayton has been a Professor of Child Health and Paediatric Endocrinology at the University of Manchester since 2001. He has authored 200 publications on the clinical and basic science aspects of pediatric endocrinology and has served on the editorial boards of many endocrine journals ( Hormone Research in Paediatrics, European Journal of Endocrinology and

## Focal Point Items

- [Pediatric Growth Hormone Deficiency (PGHD)](https://lumos-pharma.com/focal-point/pediatric-growth-hormone-deficiency-pghd/) - PGHD results in growth retardation, short stature and maturation delays whose origin might be congenital, acquired or idiopathic.

## Categories

- [Uncategorized](https://lumos-pharma.com/category/uncategorized/)
- [Official Press Releases](https://lumos-pharma.com/category/official-press-releases/)
- [Orphan Drug News](https://lumos-pharma.com/category/orphan-drug-news/)
- [Conference News](https://lumos-pharma.com/category/conference-news/)
- [Event News](https://lumos-pharma.com/category/event-news/)
- [Disease Awareness](https://lumos-pharma.com/category/disease-awareness/)

## Tags

- [ACD](https://lumos-pharma.com/tag/acd/)
- [ACMG](https://lumos-pharma.com/tag/acmg/)
- [Rare Disease Day](https://lumos-pharma.com/tag/rare-disease-day/)
- [CTD](https://lumos-pharma.com/tag/ctd/)

## Team Members Category

- [Scientific Advisory Board](https://lumos-pharma.com/board-members-category/advisory/)
- [Board of Directors](https://lumos-pharma.com/board-members-category/directors/)
- [Management](https://lumos-pharma.com/board-members-category/management/)