About

Mission

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.

Board Members

Anne Rutkowski

Dr. Anne Rutkowski, Chairman

Dr. Anne Rutkowski, MD is Chairman of Cure CMD and a co-founder. 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.

Eunice Kim

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.

Patrick May

Patrick May, Treasurer/Secretary

Mr. Patrick May is the Chief Financial Officer of Cure CMD and a co-founder. 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.

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

CMD Communications/IT Support Team

Rachel Alvarez

Rachel was diagnosed at a very early age with a mild form of Congenital Muscular Dystrophy. 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 the Finance Administrator for two local non-profit organizations. Rachel and her husband, Jesse are proud to be of service to CureCMD, giving voice to a largely unknown segment of the Muscular Dystrophy community.

Joey Bower

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.

CMD Grant Writing Team

Charlene York

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

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

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.

CMD Advocacy

Jackie Nelson

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.

CMD Project Support

Diane Smith-Hoban

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

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

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

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.

Conference Outreach and Support

Mike Newton

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.

CMDIR Lead Genetic Counselor

Ami Mehta

Ami Mehta is the lead genetic counselor for the CMDIR. Her main role in the CMDIR is curating the genetic results for each participant. She helps participants and providers understand genetic testing in CMD, current options for enhanced testing, and the implications of various mutations found through CMD genetic testing. In addition to her role as CMDIR’s genetic counselor, she is a pediatric and prenatal genetic counselor at Emory’s Department of Human Genetics in Atlanta, GA. Ami received her masters in genetic counseling from Sarah Lawrence College and her bachelors in biology from Emory University. She is also board-certified by the American Board of Genetic Counseling.

Yahoo! Support Group Moderators

Susan, Moderator of the Ullrich Yahoo! Group

Trish, Moderator of Merosin-Deficient Yahoo! Group

Antonis, Moderator of the Dystro Yahoo! Group

Contact

info@curecmd.com Cure CMD P.O. Box 701 Olathe, KS 66051 Ph. 1-866-400-3626

RareShare

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.