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.
Patrick May, Chairman & 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 eight years of experience as a Controller/Treasurer for a for-profit corporation in the greater Kansas City area. Previously he gained four years experience as an auditor with a Big 4 international accounting firm. He graduated Magna Cum Laude from the University of Notre Dame. Patrick is the father of a daughter diagnosed with merosin deficient congenital muscular dystrophy. He shares the vision for CMD to promote awareness and ultimately accelerate therapies and a cure for congenital muscular dystrophy.
Eunice Kim, Vice Chair
Eunice Kim joined CureCMD as a Vice Chair in April 2010. She directs business strategy and operations for a Silicon Valley startup, and spent three years as the President of the Board for another non-profit corporation serving children with disabilities. Her work experience includes roles in marketing, finance, and strategy at Pepsico, Bain & Co., Adobe Systems, and DLJ. Eunice graduated with an MBA from the University of Chicago Booth School of Business, and received her BA from Columbia University in New York. She has a young daughter who has been diagnosed with Ullrich Congenital Muscular Dystrophy. Eunice would like to help CureCMD build the basic infrastructure needed to advance both translational research and clinical trials for the CMDs. She also strongly supports the organization’s goal of promoting disease awareness and improved standards of care in the medical community.
Anne Rutkowski, Former Chairman
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.
Maia P.’s film was created through Make A Film Foundation’s, ‘Vidz 4 Kidz’ Program.
Make A Film Foundation teams children who have serious or life-threatening medical conditions with film industry professionals to help them create short film legacies. Our ‘Vidz 4 Kidz’ program was created to offer more film opportunities to these unique children. In this program we visit hospitals and facilities, team the children with hand-held video cameras and Film Industry mentors, and help them create short documentaries about their lives and their illnesses.
This video was shot at the MDA Camp in Orange, CA.
For more information please visit: www.makeafilmfoundation.org
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.
Volunteer and Support Staff
Sabine de Chastonay, Ph.D., Director of Devlopment
Sabine received a bachelor’s 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 US 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 August, 2015 Sabine joined Cure CMD as the Director of Development. Sabine’s role will include increasing fundraising revenue, ensuring adequate support for Cure CMD’s mission, resulting in a stronger CMD community.
Rachel Alvarez, CMDIR Director of Operations, Cure CMD Communications/IT Support
Rachel was diagnosed at a very early age with Congenital Muscular Dystrophy and has recently been confirmed to have Collagen VI CMD. She graduated with a Bachelor of Science degree in Technology and Operations Management from California Polytechnic University.
Charlene York, CMD Grant Writer
Charlene is a homemaker and a former reference librarian. Both her husband and daughter were diagnosed with Bethlem Myopathy in the past two years. She is currently using online and printed sources to track down possible grants for CureCMD.
Erin McGuirk, Grant Writer
Erin McGuirk discovered a passion for philanthropy while working in Development for the Phillips Brooks House Association at Harvard University. She wrote articles highlighting the challenges of the St. James Summer Homeless Shelter, where she volunteered as an overnight supervisor. After graduating from Harvard with a degree in English, she went on to teach English as a second language in Bangkok, and has traveled extensively throughout Southeast Asia. Drawing on her experience in the classroom, Erin understands the importance of telling a compelling story. Throughout her professional career, from an NBC newsroom in Boston to a multinational law firm in New York, she has used writing to advocate for others. In April, 2008, Erin ran her first Boston Marathon and raised over $3,000 for Neurofibromatosis, Inc. and a close friend with the disease. Now, she brings her energy, writer’s eye, and fundraising acumen to Cure CMD, to bolster its grantseeking capacity in the quest for a cure.
Jackie Nelson, CMD Advocacy
Jackie Nelson is the Director of Advocacy and Outreach for Cure CMD. Nelson 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, a Lutheran pastor, have two daughters. Katie is a college-bound high school senior who was diagnosed with merosin-positive CMD at age 3. Her parents are deeply proud of her optimism, compassion for others, work ethic and academic achievements. Elizabeth, in ninth grade, also enjoys school, athletics and service work in the community.
At Cure CMD, Nelson seeks to build alliances on shared goals with the National Institutes of Health, the Muscular Dystrophy Association 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.
Diane Smith-Hoban, CureCMD Project Support
Diane Smith-Hoban is the mom to two great boys – Luke is 14 and has UCMD and his brother Christian is 13. She is a social worker by training with an MSW degree from Temple University and has worked extensively in the child welfare system in Philadelphia, mostly as a child advocate representing child victims of abuse and neglect. Most recently, Diane co-taught a class at the University of Pennsylvania Law School helping law, social work and medical students learn how to become effective advocates on behalf of children – hard and intense work but also fun and very rewarding.
Diane has put her child advocacy training to great use as a volunteer for Cure CMD, working to help organize conferences as well as helping with analysis and writing for the Outcome Measures Survey. She looks forward to using her energy for more endeavors and opportunities that work towards building community and furthering the path to treatment for her amazingly wonderful son and all others affected by the CMD’s.
Becky May, CMD Project and Fundraising Support
Becky May is the mother of 3 amazing girls, aged 6 and under, as well as the wife of Pat May, Cure CMD co-founder and Board Member. She is a full-time mom and part-time Speech-Language Pathologist. Becky and Pat’s second daughter has merosin deficient CMD.
Becky’s role with Cure CMD includes sending thank you notes for all donations, documenting conference registrations, and tracking of individuals’ goals and donors for specific fundraising events.
Joe Pinkelman, Event Cordinator
Joe Pinkelman is the husband of Anne Rutkowski, Cure CMD Chairman. They have 2 daughters: Maia, who has a dystroglycanopathy and Betti, who just finished her training as an occupational therapist. Joe teaches high school ceramics, AP Art History, and glass blowing. Joe holds down the fort when Anne is away on a conference. His primary role as Cure CMD Event Coordinator is to ensure that CMD events are posted on the web and to assist with logistics and generating ideas for future events.
Yahoo! Support Group Moderators
1621 W. 25th Street
San Pedro, CA 90732
Phone: (424) 265-0874