About

Mission

Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. Cure CMD will also improve the lives of those living with CMD through engagement and support of our community.

Click here for the 2013 Cure CMD Annual Report

Contact US

Cure CMD
Congenital Muscle Disease International Registry (CMDIR)

19401 S Vermont Ave
Suite J100
Torrance, CA 90502

Email: info@curecmd.org
Phone: 1-424-265-0874
Phone: 1-323-250-2399
Fax: 1-310-684-2023
Skype: CureCMD


Board of Directors


Patrick May

President
Chief Financial Officer

Mr. Patrick May is co-founder, Chairman, and Chief Financial Officer of Cure CMD. Mr. May is a Certified Public Accountant with twenty years of experience in private industry serving such roles as CFO, Treasurer and Controller for various for-profit corporations in the greater Kansas City area. He graduated Magna Cum Laude from the University of Notre Dame and is the father of a daughter diagnosed with LAMA2 congenital muscular dystrophy. He shares the vision for CMD to promote awareness and ultimately accelerate therapies and a cure for the congenital muscular dystrophies. Mr. May currently serves on the Cure CMD Development Committee.


Eunice Kim

Vice President
Outreach Committee

Eunice Kim has served on the Cure CMD Board as Vice Chairman since April 2010. She is currently a Senior Product Manager at Google, and has held management roles at Pepsico, Adobe Systems, and several Silicon Valley startups. Eunice also spent three years as the President of the Board for another non-profit corporation serving children with disabilities. She graduated with an MBA from the University of Chicago Booth School of Business, and received her BA from Columbia University in New York. She and her husband Andrew live in California with their two children. Her oldest child, Sophie, has Collagen VI Congenital Muscular Dystrophy. Eunice currently serves on the Cure CMD Outreach Committee.


Rachel Alvarez

Secretary
CMDIR Director of Operations
Outreach Committee

Rachel

Rachel Alvarez

Rachel was diagnosed at a very early age with Congenital Muscular Dystrophy and has recently been confirmed to have Collagen VI CMD. She graduated Magna Cum Laude from California Polytechnic University, and worked primarily in healthcare operations and nonprofits prior to joining Cure CMD. Rachel volunteered for Cure CMD for four years before becoming the first Cure CMD employee; Director of Operations for the Congenital Muscle Disease International Registry (CMDIR) in 2012. Rachel joined the Cure CMD board in 2015 and currently also serves on the Cure CMD Outreach Committee.


Stephanie Dague

Board Member
Development Committee

Stephanie Dague lives in upstate NY with her husband, Harris, and their three children, Charlie, Farrah and Max. Stephanie has been a dedicated supporter and advocate for Cure CMD since her eldest son, Charlie, was diagnosed with LMNA-CMD in 2010. Stephanie has a BA from SUNY, Albany and has worked in the non-profit field since 2003, serving ten years as Director of Development for a national 501(c)3 organization. She has put together several fundraisers for Cure CMD and currently serves on the Cure CMD Development Committee.


John Day, MD, PhD

Board Member
Research Committee

Dr. Day is a Professor of Neurology and Pediatrics at Stanford University, where he directs the Stanford Neuromuscular Program as well as the pediatric and adult neuromuscular clinics. He has been involved in the diagnosis, management and research of neuromuscular disorders for 30 years, after having trained at the University of California, San Francisco in Neurology, with subspecialty training in neuromuscular disease. Dr. Day founded the Paul and Sheila Wellstone Muscular Dystrophy Center at the University of Minnesota in 1995, and directed it until he moved to California. At Stanford he has created a comprehensive center to optimize care for patients of all ages, with special focus on understanding and treating the multi-systemic features of neonates and infants with muscle disorders, and in developing gene modification methods to conquer these disorders. As a practitioner and investigator he has been involved with Cure CMD since its inception. Dr. Day joined the Cure CMD Board in 2015 and currently serves on the Cure CMD Research Committee.


Chuck Goria, JD

Board Member
Development Committee

Mr. Goria, specializing in real estate and business litigation, has been a licensed, practicing attorney since 1976. He has earned the top peer review rating (Av) from Martindale Hubbell. Mr. Goria is a graduate of UCLA and the University of San Diego. He wrote for the University of San Diego Law Review, and was published in that journal. He has also authored Continuing Education materials for both lawyers and real estate agents. He has served as an adjunct professor at local law schools, teaching such courses as real property law, real property secured transactions, Uniform Commercial Code Sales and Commercial Paper, and Civil Procedure. He has also served as a Superior Court Arbitrator and Mediator, and Small Claims Judge Pro Tem. Mr. Goria has successfully litigated a wide variety of cases, with an emphasis in real estate and business disputes. He is licensed to practice in California as well as the United States District Court, the Ninth Circuit Court of Appeal, and the U. S. Supreme Court. Mr. Goria is a member of the San Diego County Bar Association and the Real Estate Committee of the San Diego County Bar Association. He has a young granddaughter diagnosed with LMNA-CMD. Mr. Goria joined the Cure CMD Board in 2015 and currently serves on the Cure CMD Development Committee.


Dione Kobayashi, PhD

Board Member
Research Committee

Dione Kobayashi, PhD

Dr. Kobayashi is the Vice President of Preclinical Translation at Cydan Development a rare disease accelerator. Dr. Kobayashi is an accomplished executive scientist with a deep knowledge of and experience in drug development activities for rare diseases, including drug screening, biomarker development and regulatory strategy. Prior to joining Cydan, Dr. Kobayashi worked as an executive scientist in several biotech and pharmaceutical companies as well as non-profit organizations. She was a director of neurology models at Alector, where she played key roles in leadership on discovery and lead characterization for Alzheimer’s and other dementia programs in pre- and post-funding startup environments. Previously, she was a director at the Spinal Muscular Atrophy Foundation, where she led in vivo drug screening and clinical biomarker validation and established numerous drug development collaborations with biotech and pharmaceutical company partners. She served as the Alzheimer’s and age-related macular degeneration research program leader at Rinat Labs, which was acquired by Pfizer. Dr. Kobayashi also held research roles at Elan Pharmaceutical and Genentech. She has published various journal articles focused in neurodegenerative, neurodevelopmental, neuromuscular, and ocular rare genetic diseases.

Dr. Kobayashi received her BSci in Brain and Cognitive Science from MIT, MSci in Cell, Molecular and Neurosciences from University of Hawaii Manoa, and her PhD in Neuroscience from the University of Edinburgh. She is a member of the Cure CMD Scientific Advisory Board and a Science Advisor to the Limb Girdle Muscular Dystrophy 2D Foundation. Dr. Kobayashi joined the Cure CMD Board of Directors in 2015 and also serves on the Cure CMD Research Committee.


Jeffrey Rowbottom

Board Member
Development Committee
Research Committee

Jeffrey Rowbottom

Jeff joined the Cure CMD Board in 2015 and will primarily focus on helping to accelerate the promising and novel developments in science/research into treatments for CMD patients. Jeff has a family member with Collagen VI-CMD. Jeff is a Partner at Pontifax, a venture capital investment firm focused on life sciences and biotech. Prior to joining Pontifax, Jeff was the Head of Capital Markets, Americas for KKR. He worked in senior capital markets roles at Goldman Sachs, Barclays Capital and Citigroup before joining KKR. Jeff holds a B.S. in Finance from SUNY at Albany and an MBA from Columbia University. In addition to Cure CMD, he is on the Board of the Melanoma Research Alliance, Project Renewal and The Elisabeth Morrow School. Jeff currently serves on the Cure CMD Development and Research Committees.


Herb Stevenson, MD

Board Member
Research Committee

Herb Stevenson, MD

Dr. Stevenson is a Sports Medicine Physician and Associate Professor at the University of Massachusetts Medical school. He is the father of a son with LGMD2i. Dr. Stevenson has worked since 2011 with Cure CMD through the Stevenson Family Fund to support research in the congenital muscular dystrophies. Dr. Stevenson has an interest in muscular disorders and has helped work with scientists and clinicians to advance research with a particular focus on translating gene therapy for congenital muscular dystrophies into clinical trials. Dr. Stevenson is a graduate of the University of Vermont College of Medicine and resides in Massachusetts with his wife Meridith and 3 children Hannah, Amelia, and Carter. Dr. Stevenson currently serves on the Cure CMD Research Committee.


Staff, Committee Members and Volunteers

Anne Rutkowski, MD

Medical Director
Director of Research

Anne Rutkowski, MD

Dr. Anne Rutkowski, MD is Co-Founder and Former Chairman of Cure CMD (2009-2012) and oversees the annual Cure CMD grant program, scientific conferences, biobanks, registry and traveling local clinics. Anne continues to work with clinicians and scientists worldwide to support current CMD research and evaluate opportunities for the CMDIR to participate in clinical research. Dr. Rutkowski is a practicing board certified emergency medicine physician in Los Angeles. Dr. Rutkowski’s daughter has congenital muscular dystrophy, subtype, dystroglycanopathy. Dr. Rutkowski graduated from the University of California Irvine Medical School, elected to Alpha Omega Alpha Honor Medical Society. She attended Bryn Mawr College as an undergraduate, graduating Magna cum laude with Honors in Biology. Prior to attending medical school, Dr. Rutkowski taught for 3 years in an inner city elementary school in Los Angeles, as part of Teach for America. She would like to shrink the diagnostic odyssey, see improvements and standardization of guidelines in medical care for all patients with CMD and a focused approach to identifying therapeutic targets. As a former educator, education and improved disease awareness are two further areas of focus for Cure CMD. Dr. Rutkowski currently serves as Medical Director for the Congenital Muscle Disease International Registry (CMDIR) and Director of Research for Cure CMD.


Sabine de Chastonay, PhD

Director of Development
CMDIR Research Associate

Sabine

Sabine de Chastonay, PhD

Sabine received a bachelor degree from the ETH in Zürich, Switzerland, and a Ph.D. in Molecular and Microbiology from the University of Bern, Switzerland. She has lived in the U.S. with her family since 1992 and raised two children as a stay-at-home mom involved in various community organizations. In April 2012, she joined the Congenital Muscle Disease International Registry (CMDIR) as a volunteer Research Associate. In 2015, Sabine joined Cure CMD as the Director of Development. Sabine’s role includes increasing fundraising revenue to ensure adequate support for Cure CMD’s mission, resulting in a stronger CMD community. Sabine serves on the Cure CMD Development Committee.


Sara Bloomfield

Outreach Committee

Sara has been an active member of the Cure CMD organization since 2012. She has a business degree from ASU and an MBA from Notre Dame. Sara’s work experience includes roles within marketing, sales, product management, and business development. Sara has a young daughter that was diagnosed with LAMA2-CMD in 2012. Within Cure CMD, Sara has worked on projects including fundraising efforts and social media. Sara currently serves on the Cure CMD Outreach Committee.


Carla Grosmann, MD

Outreach Committee
CMDIR Physician Advisor

Bio Forthcoming
Dr. Grosmann currently serves on the Cure CMD Outreach Committee and as a physician advisor for the Congenital Muscle Disease International Registry (CMDIR).


Diane Smith-Hoban

Outreach Committee

Diane Smith-Hoban lives in the Philadelphia suburban area with her husband James, and her young adult sons, Luke and Christian. Luke has Collagen VI CMD. She holds an MSW degree from Temple University and has worked as a child advocate social worker and educator in the Philadelphia child welfare system for over 20 years. Diane has volunteered with Cure CMD since its inception organizing conferences and fundraisers as well as working on several publications, including the Family Guide for the Management of CMD. Diane currently serves on the Community/Outreach Committee.


Robin Swallow

Outreach Committee
CMDIR Curator

Robin Swallow is a retired librarian with a Master’s degree in Library Sciences from UCLA. She is the grandmother of two great boys diagnosed with SEPN1 in 2014. Her beautiful granddaughter is unaffected. She is a volunteer with the CMDIR and currently serves on the Cure CMD Outreach Committee.


Charlene York

Outreach Committee
CMDIR Curator

Charlene York has been a volunteer with Cure CMD since 2009. She has a husband and daughter with Collagen VI Muscular Dystrophy. She has a Masters in Library of Science. Charlene has worked on several Cure CMD projects since joining the organization in 2009, and currently coordinates all travel. She also curates for the Congenital Muscle Disease International Registry (CMDIR) and supports related study projects. Charlene currently serves on the Cure CMD Outreach Committee.


Janet Young

Outreach Committee
CMDIR Curator

Janet Young is a proud mother of 2 grown daughters, native of Los Angeles and has a BFA from Cal State Long Beach in Interior and Architectural Design. Janet has volunteered for many organizations throughout her adult life and after returning from living abroad in Asia, she was happy to settle back in Southern California and begin a new chapter in her life with Cure CMD. Janet is passionate about Cure CMD and is grateful to be working towards a goal among staff and families she admires and respects. One of her duties is reaching out to the families and speaking with them one on one to keep their registry profile up to date. Janet loves to cook, dance, laugh, eat chocolate, and meet new people. Janet currently serves on the Cure CMD Outreach Committee.


Jackie Nelson

Jackie Nelson

Jackie Nelson

Jackie has extensive professional experience in marketing communications and advocacy in Minnesota, having worked in nonprofit and corporate settings for over 25 years. She holds an MBA degree in Marketing from the University of St. Thomas in Minnesota and completed her undergraduate work in the School of Journalism at the University of Minnesota. Jackie and her husband, Karsten, have two daughters. Katie, a college student, was diagnosed with merosin-positive CMD at age 3. Jackie seeks to build alliances on shared goals with the NIH, the MDA and other rare disease groups. She encourages individuals with CMD, and their parents, family members and friends to become advocates who are willing to write, call or visit their legislators on key issues that affect our children and families.


Joe Pinkelman

Joe Pinkelman

Joe Pinkelman

Joe Pinkelman is the husband of Anne Rutkowski, who co-founded Cure CMD. They have two daughters and one son. There middle child, Maia, has a dystroglycanopathy. Joe teaches high school ceramics and holds down the fort when Anne is away on a conference. Joe is the FB moderator for Dystroglycanopathy with Cognitive Impairment.


We would like to acknowledge Richard Cloud’s outstanding contribution to Cure CMD as one of the original co-founders and former Chairman. Richard Cloud is currently CEO of Prothelia, Inc, a biotech company focused exclusively on muscular dystrophy therapies.

  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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