We C.A.R.E. Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support





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Supporting Compassion for families, Awareness, Research, and Education.
 


About Us

The MLD Foundation is a 501(c)(3) non-profit US tax-exempt organization. We were formed in May 2001 to serve families throughout the world affected by metachromatic leukodystrophy (MLD), a terminal genetic disease.

We C.A.R.E.™ reflects our mission of Compassion, Awareness, Research and Education.

Donations to the MLD Foundation are tax deductible and will be used to further activities in one of these four areas.

Medical & Scientific Advisory Board
The MLD Foundation's Medical & Scientific Advisory Board is our formal advisory resources to advise us on medical and scientific issues related to MLD. They represent the state of the art in research and clinical science. Many are well know experts in MLD, however, we have several experts in fields closely related to MLD to make sure we are in touch with related research and clinical work. We are proud to present our current Medical & Scientific Advisory Board:

Dr. Alessandra Biffi ... Pediatrician ... Director of the Gene Therapy Program and Director of the Program for Cell and Gene Therapy in Rare Diseases (at Dana-Farber), Member of the Faculty of Pediatrics, Boston Children's Hospital, (former PI for Milano gene therapy development & clinical trial)

Prof. Timothy Cox ... Fellow and Professor of Medicine - Cambridge University - with a focus on Lysosomal Diseases. ... Addenbrooke’s Cambridge University Hospital, UK. (Cambridge, UK)

Dr. Christine I. Dali ... Pediatric Neurologist ... Principal Investigator for the Phase I/IB Clinical Trials in Europe for Metazyme, an Enzyme Replacement Therapy for MLD. ... Rigshospitalet, Department of Clinical Genetics, University Hospital Copenhagen, Denmark. (Copenhagen, Denmark)

Dr. Maria Escolar ... Neurodevelopmental pediatrician ... MS Director, Program for the Study of Neurodevelopment in Rare Disorders (NDRD), Children's Hospital of Pittsburgh, University of Pittsburgh Medical Center. Formerly with the NFRD -Neurodevelopmental Function in Rare Disorders program at University of North Carolina, Chapel Hill. (Pennsylvania, USA)

Dr. Julie Hauer ... Pediatrician, Pediatric Palliative Care Specialist ... Dr. Hauer is Pediatric Neuro-Palliative Care Consultant, Medical Director, Seven Hills Pediatric Center, Division of General Pediatrics, Children’s Hospital Boston. She brings great skill, perspective, and compassion to the families who are trying to maintain and improve the quality of life for their MLD loved one. Author of Caring for Children Who Have Severe Neurological Impairment (Massachusetts, USA)

Dr. Marc Patterson ... Pediatric and adolescent Neurologist ... Mayo Clinic. Marc is a well respected lysosomal disease clinical researcher. He is a professor of neurology, pediatrics and medical genetics, chair of the Division of Child and Adolescent Neurology, editor for the Journal of Inherited Metabolic Disease, editor-in-chief of the Journal of Child Neurology and Child Neurology Open. Mayo Clinic (Rochester, MN USA)

Dr. Adeline Vanderver ... Child Neurologist & Researcher, Children's National Medical Center and Assistant Professor, George Washington University School of Medicine (Washington DC, USA) ... Founder/Chair of GLIA, the Global Leukodystrophy Initiative.

Dr. David A. Wenger ... Clinical Biochemical Genetics and Clinical Molecular Genetics ... Director of the Lysosomal Diseases Testing Laboratory, Jefferson Medical College (Pennsylvania, USA)

Administrative Board
The MLD Foundation's Board represents a variety of experiences and perspectives from parents to doctors and includes several outside professionals to assure that the MLD Foundation remains focused and accountable for all of its philosophical and financial actions. The Board consists of 6 people:

Christine Hoffmann ... The Hoffmann's daughter, Olivia, passed away in late 2010 from the late infantile form of MLD at age 8. Christine has been actively engaged with the MLD Foundation for a number of years. Locally in the Phoenix area, she is involved in several community projects including Ryan House. (Arizona)

Dr. Marc Patterson professor of neurology, pediatrics and medical genetics, and chair of the Division of Child and Adolescent Neurology, Mayo Clinic (Minnesota)

Wilson W. Smith III ... Creative Design Director, Nike (Oregon)

Rob Teach ... Senior Vice President of US Bank, Commercial Lending (Missouri)

Teryn Suhr ... Executive Director ... MLD parent and co-founder of the MLD Foundation. (Oregon)

Dean Suhr ... President & Board Chair ... MLD parent and co-founder of the MLD Foundation. (Oregon)


Charity Status
The MLD Foundation was formed on May 11, 2001 by filing with the state of Oregon (USA) as a non-profit charity organization. Our United States IRS 501(c)(3) non-profit tax exempt charity status was granted on October 24, 2003 retroactive to May 11, 2001. Frequently requested reference documents can be found here:

The following links might also be of additional interest to learn more about the MLD Foundation:

 

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