Staff, Volunteers, Board & Committee Members

Rachel Alvarez

Rachel was diagnosed at a very early age with an unspecified CMD, finally confirmed to have Collagen VI CMD in 2009. She graduated Magna Cum Laude from California Polytechnic University, and spent her career working in healthcare finance, operations, and non-profits prior to joining Cure CMD. Rachel volunteered for four years before becoming Cure CMD's first employee in 2012. She joined Cure CMD's Board of Directors in 2015 as Secretary. Rachel lives in Los Angeles with her husband, Jesse.

Secretary, Board of Directors | Executive Director | Outreach Committee

Gustavo Dziewczapolski, PhD

Dr. Dziewczapolski received his Master's degree from the University of Buenos Aires, followed by a Ph.D. in Neuropharmacology. He then moved to the United States to hone his scientific career, spanning eighteen years in research at UC San Diego and the Salk Institute. Dr. Dziewczapolski now begins a new stage of his career as Cure CMD's Scientific Director beginning September 1, 2016. He is the father of two beautiful daughters, Tatiana and Rafaela, who continue to challenge and inspire him. And to balance his addiction to chocolate, he enjoys surfing and soccer.

Scientific Director

Terry Selucky

Terry is a grant writer who has helped raise nearly $10 million for philanthropic organizations focusing on health, homelessness, domestic violence, and the arts. For Cure CMD, she wrote the application that won the PCORI Award, which allowed for the 2016-2017 five-conference series. Terry is honored to be a part of the teams that make a difference for people around the world. Terry is also a playwright whose work has been produced across the country. Her experience in advertising, nonprofits, and the theater have allowed her to become an effective leader and collaborator, building consensus across diverse interest groups to see a  project from inception to success.

Grants and Public Relations | Fine Point Consulting

Robin Swallow

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. Robin serves as a volunteer curator and outreach coordinator for Cure CMD and the Congenital Muscle Disease International Registry.

Outreach Committee | Curator

Charlene York

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, and currently coordinates all travel. She also curates for the Congenital Muscle Disease International Registry (CMDIR) and supports related study projects. 

Outreach Committee | Curator

Patrick May

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-CMD. He shares the vision for CMD to promote awareness and ultimately accelerate therapies and a cure for the congenital muscular dystrophies.

Chairman | Chief Financial Officer

Eunice Kim

Eunice Kim has served on the Cure CMD Board as Vice Chairman since April 2010. She is currently a Senior Manager at Google, and has held 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 CMD. 

Vice Chairman | Outreach Committee

Mark Beare

Mark has been a member of the CMD community since 2015 when his daughter Bella was diagnosed with LAMA2. He serves as the Vice President of Research and Development for Corel during his workday and tries his best to entertain his 2 toddlers when not working. Mark's experience is strong in the areas of website development, marketing and communication. He is very passionate about one day finding a cure for his child and all other affected by the varying CMDs. Mark joined the board in July, 2018.

Board Member

Sara Bloomfield

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 joined the board in July, 2018.

Board Member | Development Committee

John Day, MD, PhD

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.

Board Member | Research Committee | Scientifc Advisory Board

Carla Grosmann, MD

Dr. Grosmann is a neurologist at Rady Children's Hospital in San Diego, and is a clinical professor at the University of California San Diego (UCSD). She specializes in neuromuscular disorders and electrodiagnosis in children and adults, with a particular interest in undiagnosed muscular dystrophies and advocacy.  Dr. Grossman joined the Cure CMD Board of Directors in 2017, and serves as a physician advisor to Cure CMD and the Congenital Muscle Disease International Registry (CMDIR). 

Board Member | Outreach Committee | Medical Adivsor

Tim Knutson

Tim Knutson has been part of the Cure CMD community since 2015, shortly after his sons Peter and Michael were diagnosed with SEPN1-related myopathy. Since then, the Knutson family holds an annual fundraiser called the Brothers K which supports research for SEPN1. Tim earned a Bachelor of Arts from Luther College, a Master of Arts from Luther Seminary, and is currently the Director of Gift Planning at Carthage College. He lives with his family in Wauwatosa, Wisconsin.

Board Member

Oscar H. Mayer, MD

Dr. Mayer is an expert in the assessment and treatment of neuromuscular disorders with an emphasis on the pulmonary manifestation in neuromuscular diseases. He is the Director of the Pulmonary Function Laboratory at the Children’s Hospital of Philadelphia. He also served as the co-principal investigator for the CMD Hyperinsufflation Trial, and continues to support and advocate for proactive pulmonary care for the CMD Community. Dr. Mayer joined Cure CMD’s Board of Directors in 2017.

Board Member | Medical Advisor

Megan Meyer

Megan lives in Iowa with her two kids, Ethan and Lillian, and husband, Justin. Megan has been involved in the CMD community since Lillian's SEPN1 diagnosis in 2014. Megan holds a marketing degree and MBA from Bellevue University and has worked in a variety of public relations and/or advocacy roles for 20 years, including: major gifts officer, marketing and PR director, research coordinator, family navigator for children with special healthcare needs and currently in higher education as the Program Administrator for University of Iowa's Genetics PhD program and Neuroscience PhD program. Megan has 15 years of non-profit board of directors experience as member or chairperson in both regional and state level boards. Within Cure CMD, Megan co-hosts the Two Rare Mama Bears Podcast, is a part of the CMD Advocacy Team and has advocated on Capitol Hill for CMD and rare disease families.

Board Member | Outreach Committee

Jeff Rowbotttom

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 Managing Director in Private Debt at PSP Investments (C$135 billion Canadian Pension Fund).    Previously, Jeff was a Venture 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 and The Elisabeth Morrow School. 

Board Member | Development Committee | Research Committee

Rob Sunris

Rob Sunris has been a Cure CMD community member since 2016 and on the advocacy team since 2019. Rob is a Process Engineer at Bank of America and has 26 years of experience in the manufacturing and financial services industries. He finds his problem-solving and engineering skills to be an excellent match for the disability community and has been active with several non-profits. He holds an MBA from Arizona State University, an MS Industrial Engineering from Cleveland State University, and a BS Industrial & Systems Engineering from The Ohio State University. Rob's teenage daughter, Kierra, lives with Collagen VI CMD and the Sunris family resides in Charlotte, NC. He joined Cure CMD's Board of Directors in 2019.

Board Member

Jodi Wolff, PhD

Dr. Wolff is the Director of Patient Advocacy & Medical Science Liaison at Santhera Pharmaceuticals, where she promotes and facilitates patient engagement in the drug development process. She earned her PhD in Rehabilitation from the University of Arizona, focusing her research on the transition to adulthood for youth with neuromuscular disease. Dr. Wolff has worked with young people who have muscular dystrophy for over 20 years and was formerly the Director of Clinical Programs at the Muscular Dystrophy Association. Dr. Wolff joined Cure CMD’s Board of Directors in 2017.

Board Member

Lani Knutson

Lani Knutson is mom to Peter and Michael, who are both affected by SEPN1 related myopathy. The Knutson family joined the Cure CMD community in 2015 when the boys received their genetic diagnosis. Since then they have held an annual fundraiser called the Brothers K which supports research for SEPN1. Lani currently works for a non-profit that provides employment for people who are blind or visually impaired, however she has spent most of her career as an educator and musician. The Knutsons live in Milwaukee, Wisconsin and enjoy being in the outdoors no matter the season.

Development Committee | Advocacy Team Leader

Mathea Manley

Matty Manley is a CMD mom that lives in Washington State, with her husband and three children. Matty’s middle child, Matthew, has SEPN1 CMD. Matty has previously been part of a traveling ministry team that allowed her the opportunity to travel around the western United States meeting new people, and doing some public speaking. Matty also spent time working as a nursing assistant at a local nursing home and hospital. Now, Matty spends her time with her family enjoying the Pacific Northwest and volunteering in her local community. Matty is very excited to continue working with Cure CMD on advocacy efforts, like her week on Capitol Hill for Rare Disease Week.

Outreach Committee; Co-host: Two Rare Mama Bears CMD Podcast, CMD Advocacy Team

Diane Smith-Hoban

Diane Smith-Hoban lives in the Philadelphia suburban area with her young adult sons, Luke and Christian. Luke has Collagen VI CMD. Diane 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. She 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. 

Outreach Committee

Brendan Sullivan

Brendan Sullivan has worked with Cure CMD since the death of his daughter, Ava, in 2009.  Brendan was part of the initial CMD Tissue Repository team.  He is the father of 7 children, two of whom (Ava and Keira) passed away from Walker Warburg Syndrome.  Brendan lives and works in Connecticut.  He is a full-time IRB manager at his local VA hospital, and is a voting IRB member/Primary Reviewer on two Yale IRBs.  Brendan represents Cure CMD as a reviewer on a Peer Reviewed Medical Research Program, sponsored by the Department of Defense.  This program was designed to help determine how research funding appropriated by Congress will be spent.

Outreach Committee; Panelist, DOD Peer Reviewed Medical Research Program

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With our utmost gratitude, we thank Dr. Anne Rutkowski (co-founder, former chairman, and medical director) for her long standing service to the CMD Community. Without Anne's vision over the last eight years, Cure CMD and the Congenital Muscle Disease International Registry would not be where we are today.

We would also like to acknowledge Richard Cloud in his outstanding contribution to Cure CMD as co-founder and former chairman.

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Cure CMD is U.S. registered 501(c)(3) non-profit organization. Donations are tax deductible to the
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