Cure CMD’s mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will achieve this mission by working globally together with dedicated parent, government and research advocates. By focusing on this mission, Cure CMD will find and fund high potential research and clinical trials. Success will be determined by clinical applications that improve the lives of those afflicted with CMD’s.
Click here to download our brochure in English.
Click here to download our brochure in Italian.
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
Livija Medne, CMDIR Lead Genetic Counselor
Livija Medne, MS, CGC, joined the Cure CMD International Registry (CMDIR) as the lead genetic counselor in 2011. She is a senior genetic counselor at The Children’s Hospital of Philadelphia in Divisions of Neurology and Genetics. For the last 10 years, she has specialized in neuromuscular and neurogenetic diseases. Born in Riga, Latvia, she came to the U.S. after high-school and received her BA in Biology, Psychology and Secondary Education from Concordia University Wisconsin and subsequently her MS in Genetic Counseling from University of California, Berkeley.
As a genetic counselor, her goal is to facilitate accurate and genetically confirmed diagnosis (whenever possible) for all children with CMD and other neurologic disorders. Helping parents understand on an intellectual level that they did not cause their child’s neurologic disorder and addressing their personal guilt issues is one of Livija’s main goals of genetic counseling along with explanation of the diagnosis, its natural history, genetics and inheritance patterns.
Meera Gandhi, Research Associate
Meera Gandhi is a recent graduate from California State University, Long Beach with her Bachelors in Science in Biology and a minor in Chemistry. She has worked and volunteered extensively with various programs like Special Olympics and the MDA camp where her interest in CMD began. As the Research Assistant for Cure CMD, she will help with creating and distributing the newsletter, participate in conferences, and assist in any way possible to help this organization grow and prosper.
Teresa Alcala, Clinical Nurse Curator
Teresa Alcala, BSN, RN, PHN is a mom of two small children with disabilities. She knows how it feels to deal with many doctors, physical therapy, occupational therapy, annual assessments and all the unexpected requirements/recommendations for our children. She knows from experience it can be lonely and difficult at times. She is honored and happy to help guide families dealing with CMD.
Irma Bermudez, Clinical Nurse Curator
Irma Bermudez is currently completing her BSN at Cal State University. She has worked for Kaiser Permanente since 2004, where she started in medical surgical/oncology before transferring to the ER where she met Dr. Rutkowski. Irma is married with two young daughters. The mission behind the Cure CMD awareness effort is what motivated Irma to become part of CureCMD. The strength and determination of our families to fight this progressive and debilitating condition inspires her and she is very excited to be part of the team!
Emily Pinho, Clinical Nurse Curator
Emily Pinho has recently joined the CureCMD team as a clinical nurse curator. She obtained her RN/BSN in Springfield, Missouri in 2007, but is now working as a contract ER nurse in Southern California. She is excited to learn more about CMD and to be a part of the CMDIR project.
Aimee Merton, Clinical Nurse Curator
Aimee Merton is married to Jon and mommy to energetic 1 year-old Olivia. She has been an Emergency Department nurse for 2 years at Kaiser Permanente. Her biggest goal for CMDIR is to raise awareness and promote patient advocacy.
Raquel Tapia, Clinical Nurse Curator
Raquel Tapia is a nurse, mother, and wife. She has chosen to work with cmdir because, “I want to help Dr. Rutkowski in any way I can; after hearing her speak, it was inspiring.”
Ashley Wilkman, Clinical Nurse Curator and Research Assistant
Ashley Wilkman recently graduated from California State University, Long Beach with a BS in Physiology and a minor in Chemistry. She currently works at Providence Little Company of Mary San Pedro as a Unit Secretary in the ER. Ashley is excited to work with CMDIR as a clinical curator and research participant, hoping to learn more about CMD and assist in any way she can.
Monique Millichamp, CMDIR Medical Records Coordinator and Research Assistant
Monique Millichamp will be graduating from California State University, Long Beach with her Bachelors in Science in Biology and Kinesiology, and a minor in Chemistry. As a CMDIR assistant, she is proud to assist researchers collect medical information on CMD patients in order to develop treatments for individuals and families that are struggling from this genetic disorder.
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.
Sandee Lefcoe, CMD Grant Writer
Sandee is a 66 year old grandmother with Bethlem Myopathy. She was a business major at Old Dominion University, started a non-profit organization called Suited For Success, wrote a book, and is presently running a children’s clothing website.
It took 25 years ,of searching for an answer, before her diagnosis of Bethlem Myopathy was made. Being a part of this special grant team gives her the opportunity to play a small part in the search for funds needed, to look for earlier diagnosis, treatments and a cure for all with CMD.
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.
Susan Sklaroff-Van Hook, CureCMD Project Support
Susan Sklaroff-Van Hook works as a special education parent advocate at a disability rights agency in New Jersey. Her background is eclectic, including careers in both dance and geologic science. Susan’s favorite career is that of mother to Alex, now a college-bound senior in high school. Alex is diagnosed with CMD of unknown subtype and is deaf. Susan’s current work allows her to apply her real-life skills as an educational and medical advocate and to constantly increase her knowledge-base regarding the supports and services necessary in order for children with disabilities to have full access to the educational process. Her volunteer efforts for Cure CMD include participating in the development and interpretation of the Outcome Measures Survey, helping to coordinate the up-coming Family Conference at CHOP, and training to participate in the NJ Half Marathon this May which will helped to raise money and awareness for research toward the treatment/cure of CMD.
Ann Cloud, CureCMD Project Support
Ann stays at home full-time (although they are rarely “at home!”) with her three beautiful children, ages 6, 4, and 1. Her oldest daughter, Ashley, was diagnosed with Merosin-Deficient CMD at nine months of age. Her husband, Rich, is the former Chairman of Cure CMD, and was one of the parents who helped Cure CMD get started. Ann is a former corporate trainer in the insurance industry, and holds a secondary teaching degree. She has and continues to be a strong advocate for Cure CMD, the MDA, and for any issues that arise concerning her daughter.
Ann played a key role in getting the Cure CMD website up and running. She assisted Rich in putting on the Cure CMD Golf Tournament in 2009, which raised over $12,000. Ann is currently organizing “Cook For a Cure,” the first ever Cure CMD cookbook, which will feature over 500 recipes from various parts of the world. Ann also volunteers at her church, as well as at Ashley’s school.
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.
Brendan Sullivan, CureCMD Tissue Bank Development
Brendan is the father of 4 great kids, aged 7 and under. His two youngest, Ava (age 2.5, passed away on 12/23/09) and Keira (23 months) suffer from Walker Warburg Syndrome, one of the most severe forms of Congenital Muscular Dystrophy. Brendan is a 6 year Navy veteran currently working as an IRB administrator for a large research department. Brendan’s role with Cure CMD involves assisting Dr. Rutkowski in developing a tissue bank which includes muscle biopsies and autopsy specimens.
Mike Newton, Conference Outreach and Support
Mike Newton is a native of Atlanta, Georgia and is 45 years of age. He has gone through a long diagnostic odyssey but finally discovered in 2006 that he has Bethlem Myopathy. His brother also suffers from the disease.
Mike is a successful entrepreneur and owns his own IT consulting business. He holds a BBA in Finance and an MBA in Computer Information Systems both from Georgia State University. Mike has been involved with CureCMD since late 2008 and has helped with planning and staffing CureCMD’s booth for a trade show and is also helping with the organization of the annual conference.
Recently an article in the Journal of NeuroMuscular Disorders was published about Mike and his brother and this article is helping doctors around the world fine tune their diagnosis of Bethlem Myopathy.
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.
Rachel Alvarez, 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. In addition to her work for CureCMD, she currently serves as Finance Administrator for two local non-profit organizations. Rachel provides website, research, and other technical support as needed by the organization.
Joey Bower, Communications/IT Support, Conference Coordinator
Joey’s involvement with Cure CMD stems from being the father of a child with a rare form of Congential Muscular Dystrophy, Jake Bower. He and his Jake’s mom knew from the very beginning that they wouldn’t be able to sit around and wait for a miracle. Even before Cure CMD formed, the family started a website for Jake to raise awareness about CMD and their amazing boy on an unknown journey. It was only natural to volunteer to do everything they could to find a treatment or cure in his lifetime. Joey assists this vital organization with Web Development, eCommerce, Tradeshows, etc. Please join us, if you are reading this, you are the fuel that drives us all.
Yahoo! Support Group Moderators
email@example.com Cure CMD P.O. Box 701 Olathe, KS 66051
RareShare is dedicated to building international online communities designed to increase the level of communication and support among patients, families and healthcare professionals affected by rare disorders.