Alex is a graduate student of Neuroscience at McGill University, studying disease mechanisms underlying hypomyelinating leukodystrophies. She is an editor at the McGill Journal of Medicine, a scientific communications officer at the United Leukodystrophy Foundation and heads the Research Branch of the first Rare Disease Interest Group. She is pursuing a PhD and is a recipient of the prestigious federal Canadian Doctoral Award (CIHR) and the provincial Doctoral Training Scholarship (FRQS). Her younger brother was first diagnosed with a leukodystrophy in 1999 which was later confirmed to be MLC type 1. This has driven her to pursue a career in rare disease research. She aims to better bridge the fundamental “bench to bedside” link in patient care and advocate the importance and value of researching orphan disorders.
Alliance MLC is a nonprofit organization founded in 2023 to help connect families around the globe that are affected by Megalencephalic Leukoencephalopathy with Subcortical Cysts (MLC).
MLC is an extremely rare genetic brain disorder that consists of about 250 known cases worldwide but it is suspected that there are around 2000 cases including countries with unknown statistics.
Alliance MLC was created by a group of determined, action-oriented and ambitious parents who share the dream that one day every person affected by MLC will have the chance to live a long and healthy life.
We are committed to providing ongoing support for our families, as well as accelerating progress of MLC research with the ultimate goal of one day developing a treatment. Research is currently ongoing in various cities globally but before this research goes to the next stage of clinical trials, it is imperative that we have a patient registry up and functional.
Alliance MLC with the support of our MLC Medical Consortium based in the Netherlands will look to establish this patient registry along with natural history and impact of disease.
Please visit our Registry section for more information.
MEET THE BOARD OF DIRECTORS
Christina is the Chair of the Board and founder of the Indian Film Festival of Los Angeles (IFFLA). She has previously worked at Film at Lincoln Center, the Museum of the Moving Image, and the American Film Institute. She holds a B.A. in international relations from Athens University of Economics, and an MBA from California State University, Long Beach. Christina is the mother of two sons; her younger son has been diagnosed with MLC1. She is committed to making the world a better place for MLC patients and finding a cure to treat this rare disease.
Stephen is CEO and Co-founder of Futures First Gaming (FFG), a STEM.org™ accredited esports and education company headquartered in Wilmington, Delaware. He serves as the Senior Director of Digital Products for the Heart Rhythm Society, a global medical professional organization for Electrophysiologists. Throughout his career, Stephen has successfully overseen the strategic implementation and execution of business operations for multimillion-dollar corporations and nonprofit organizations. He holds a degree in Business from Western International University, and a Certificate in Branding & Marketing from Northwestern University Kellogg School of Management. Stephen is the father of five sons, including his youngest who has been diagnosed with MLC1. He is committed to finding a cure and providing opportunities for individuals with MLC to thrive in life using the power of gaming and esports to unlock a whole new world of opportunity.
MEET THE CO-FOUNDERS
Marla lives in a small town in rural Ontario, Canada. A graduate of the University of Toronto with a Bachelor of Science in Pharmacy, she co-owned a pharmacy with her husband Ron for many years. She is the mother of 3 adult children, one of whom was diagnosed with MLC1 in early 2000. When she is not busy working or caregiving, she volunteers her time with the Canadian Electric Wheelchair Hockey Association as a referee and the secretary of its London, Ontario chapter. Marla is also a great advocate for the United Leukodystrophy Foundation, a nonprofit organization of which she was a prior board member.
Ron graduated from the University of Toronto with a Bachelor of Science in Pharmacy degree. He and his wife Marla have co-owned a successful and busy retail pharmacy and raised 3 children who have grown into mature, fun-loving adults. After the diagnosis of MLC1 of his middle child, Ron became engaged with the United Leukodystrophy Foundation (ULF) and became a board member in 2007. He has served as the vice-president of the board for the last 7 years and effective January 1st 2023 assumed the presidency of the ULF.
MEET THE ADVISORY BOARD
Raúl Estevez is Full Professor at the University of Barcelona, member of the board of directors of the Institute of Neurosciences, member of IDIBELL, and unit leader at the CIBERER (Spanish center for rare diseases). Raúl worked as a postdoc at the Zentrum Molekulare Neurobiologie Hamburg (ZMNH, Hamburg, Germany) funded by an EMBO and Marie Skłodowska-Curie fellowships, and continued as a Ramón y Cajal researcher and Associate Professor. He studied the molecular basis of rare brain diseases and channelopathies, with a focus on regulatory aspects of chloride channels. From 2003, Raúl has been studying the molecular basis of the rare disease Megalencephalic leukoencephalopathy with subcortical cysts.
Mishka Michon has a long career history in development, marketing, partnership building, strategic planning and in her last role, the management of a national rare disease non-profit, the Coalition for Pulmonary Fibrosis. The Coalition developed a comprehensive set of resources for patients and families, raised national awareness of the disease, provided millions of dollars in funding to researchers and centers focused on Pulmonary Fibrosis, and partnered with pharmaceuticals, volunteers, public relations firms and others to develop a profile that would encourage attention to and an understanding of the fatal disease. The staff also developed an ongoing relationship with the NIH as well as creating a strong presence in Washington D.C. to raise congressional action around the disease.
Dr. Jigyasha Sinha is a Consultant Paediatric Neurologist at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai, India. She leads the department of Paediatric Neurology at the hospital’s Centre for Children. Prior to that she was the Head and Consultant in the Department of Paediatric Neurology at the Institute of Neurosciences, Kolkata. She was involved in a white matter disorder project in Amsterdam under the supervision of Prof. Van der Knaap and Prof. Nicole I Wolf. Her area of interest lies in leukodystrophies, particularly MLC, hypomyelination and movement disorders. The association of MLC with the Aggarwal community and its high case burden in India has kindled her deep interest with the passion to contribute to the world of this rare disease and support the affected families.
The Alliance MLC Country Ambassadors act as delegates of our organization in their own country. They connect with families affected by MLC, provide them with support and resources that can make their everyday life more manageable. They also help fundraise so we can achieve our ultimate goal which is to accelerate research and find a treatment for MLC. If you would like to become a Country Ambassador, please CONTACT US.
We encourage you to reach out to your country’s Alliance MLC Ambassador. They are here to help you!
WANT TO BECOME A COUNTRY AMBASSADOR?
Marla and Ron Chapleau
Christina Marouda & Nick Kavelakis
Kincardine Legion MacDonald Branch 183
Stephen and Jassiria Sye
Angela and Sam Jajetovic
Mary Lynne Stewart
WE NEED YOUR HELP
Participate in the Patients Registry.
Make a donation to help us fund this project.
If we do not do it, no one else will!