About Us
MLD Foundation was formed in May 2001 to serve families throughout the world affected by metachromatic leukodystrophy (MLD), an ultra-rare, terminal, neurometabolic, genetic disease.
Donations to MLD Foundation are tax deductible and will be used to further activities in one of our four We C.A.R.E.® areas of focus.
Purpose
facilitating | C ompassion |
increasing | A wareness |
influencing | R esearch |
promoting | E ducation |
Medical & Scientific Advisory Board
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. They are all well known experts in MLD. We also 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:
Laura Adang, MD, PhD … Neurologist … Assistant Professor of Child Neurology at the Children’s Hospital of Philadelphia (CHOP), specializing in the care of children with multiple sclerosis, white matter, and neuro-inflammatory disorders. An active member of GLIA, the Global Leukodytstophy Initiative
Dr. Alessandra Biffi … Pediatrician …Professor of Pediatrics, University of Padua and Chief of the Pediatric Onco-hematology Unit of Padua Hospital. Co-Founder and Board member at Altheia Science (Milano, Italy). 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)
Brett Crawford PhD … Staff Scientist … BioMarin … (Novato, CA)
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. 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, Attending Physician in the Division of Neurology, Program Director of th at Children’s Hospital of Philadelphia CHOP Leukodystrophy Center, and Jacob A. Kamens Endowed Chair in Neurologic Disorders and Translational Neurotherapeutics … 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)
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 MLD Foundation are tax deductible and will be used to further activities in one of these four areas.
Medical & Scientific Advisory Board
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:
Laura Adang, MD, PhD … Neurologist … Assistant Professor of Child Neurology at the Children’s Hospital of Philadelphia (CHOP), specializing in the care of children with multiple sclerosis, white matter, and neuro-inflammatory disorders. An active member of GLIA, the Global Leukodytstophy Initiative
Dr. Alessandra Biffi … Pediatrician …Professor of Pediatrics, University of Padua and Chief of the Pediatric Onco-hematology Unit of Padua Hospital. Co-Founder and Board member at Altheia Science (Milano, Italy). 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)
Brett Crawford PhD … Staff Scientist … BioMarin … (Novato, CA)
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. 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, Attending Physician in the Division of Neurology, Program Director of th at Children’s Hospital of Philadelphia CHOP Leukodystrophy Center, and Jacob A. Kamens Endowed Chair in Neurologic Disorders and Translational Neurotherapeutics … 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
MLD Foundation’s Board represents a variety of experiences and perspectives from parents to doctors and includes several outside professionals to assure that 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 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)
Teryn Suhr … Executive Director … MLD parent and co-founder of MLD Foundation. (Oregon)
Dean Suhr … President & Board Chair … MLD parent and co-founder of MLD Foundation. (Oregon)
Charity Status
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 MLD Foundation:
Fiduciary & Administrative Board
MLD Foundation’s Fiduciary & Administrative Board represents a variety of experiences and perspectives from parents to doctors and includes several outside professionals to assure that 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 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)
Teryn Suhr … Executive Director … MLD parent and co-founder of MLD Foundation. (Oregon)
Dean Suhr … President & Board Chair … MLD parent and co-founder of MLD Foundation. (Oregon)
About Our Logo
MLD Foundation’s trademarked logo is a butterfly with two profiles forming the lower wings. This butterfly with profiles represents the hope for those affected by MLD to one day be free and live a new life without MLD. This is the ultimate goal behind MLD Foundation’s “We C.A.R.E.®purpose.
The two facial profiles that form the lower wings on each side represent The Faces of MLD®. They are not profiles of any specific person, rather, they represent all the many children, teens, and adults affected by MLD.
Our logo was designed by Kelly Quashnie of Studio Cue in Beaverton Oregon. She is a good friend of a family with MLD and volunteered her graphic design services to create our logo, color scheme and the look of this web site.
The butterfly logo with faces in the wings and MLD Foundation logo with stylized text, a butterfly and “We C.A.R.E” are trademarks of MLD Foundation. They are used carefully to brand and identify MLD Foundation.
We are often asked if the logo can be reproduced in some form for fundraising or other purposes. The answer is usually yes, but permission must be requested in writing in advance, and may or may not be granted after careful consideration of how the logo is proposed to be used. Specific details can be found here.
We created the logo to have a visually attractive focal point to increase awareness and recognition of MLD — which requires it to be used widely in public – in the proper contexts. MLD’s recognition is growing every month thanks to the exposure we all give it through what we do, say, and through things like using attractive symbols like the butterfly.
Use must also be consistent with trademark and copyright law so we can continue to ensure our ownership rights. You may ask why be so picky? It’s really a fine line of balance of branding/recognition/awareness with proper exposure. While it is fun to do creative things in the short term, we need to be careful for the long term that we maintain the integrity of our branding and logo design, and it’s affiliation with MLD and specifically MLD Foundation. For example, the butterfly with profiles concept could just as easily represent the hope of any organization that deals with a circumstance that affects children. If we allowed it to be used in any such circumstance it would lose its affiliation with MLD and that is something we do not want to happen. Kleenex, Xerox, and Google, for example, have this problem. Did you know it is against the law to “Google” something – text trademarks must be used as adjectives – never as nouns or verbs. Think “Google search”, “Xerox copy”, or “Kleenex brand tissue.”
We use a similar “ask for permission first” process when you wish to use our web site content.
As an aside … when our name and/or logos are used as part of a fund raising campaign we have additional requirements put on us by the IRS in order to maintain our tax exempt status. Life as a non-profit can be very complicated
Charity Status
MLD Foundation was formed on May 11, 2001 as a non-profit charitable Public Benefit Corporation by filing with the state of Oregon (USA). 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:
Our federal EIN is 93-1320953 – see W9 here
501(c)(3) – IRS Letters of Determination – download here
Dedication – February, 2020
Darcee
Lindy
Dedication – The MLD Family™ pages (the precursors to MLD Foundation) were set up to help inform, assist and join together those who have some sort of current or past affiliation with Metachromatic Leukodystrophy (MLD). It is our personal desire that people all over the world will become more aware of MLD, its affects, and the hope as the researchers seek better treatment, and eventually a cure for this devastating condition.
MLD is rare enough that, to date, no network has been put together to bring MLD patients, their families & friends, and the medical community together. It is our dream that resources and relationships started here can be a start toward that goal
We are but lay people, touched by a condition that affects bodies and minds in ways that will haunt us forever. We were devastated and alone – no compilation of MLD information, no way to connect with others who had been down this path before. We pray that this will not be a journey repeated because of what started here.
We dedicate and donate these resources in memory of our daughter, Darcee Lynne Suhr, who in her ten short years with us touched not only our hearts, but touched and changed the hearts of hundreds of other adults and children. Her oldest sister, Lindy Marie Suhr, is also afflicted with MLD.
Dean & Teryn Suhr
West Linn, Oregon, USA
February, 2020
History
MLD Foundation was formed as a result of the journey taken by Dean & Teryn Suhr of West Linn, Oregon (a journey like so many other MLD suffering families). Their oldest daughter, Lindy, started showing behavioral problems in 1988 at approximately age 8. After nearly seven years of misdiagnoses she was finally properly diagnosed with Metachromatic Leukodystrophy in 1995. At that time she was too far progressed to have any treatment, and her two younger sisters were tested for the disease. Her middle sister, Jclynn, was free from the disease – which was a blessing because their youngest sister, Darcee was affected by the disease. Jclynn was the bone marrow donor for Darcee. Darcee died in December 1995 of complications from the anti-rejection drugs interacting with her MLD disrupted metabolic system.
The Suhr’s are blessed by the time they still enjoy with Lindy – but do not want any family to suffer alone as they did – not knowing about MLD early enough, not knowing who to ask for more information, and not knowing what to expect next as the disease and therapies ran their course. Dean set up the MLD Family as a world-wide e-mail discussion group shortly after Darcee’s death. The discussion list is the world’s largest MLD community.
That group grew in numbers and relationships for several years when the Suhr’s decided to organize and host the first MLD Family meeting, MLD 1999, in conjunction with Dr. Bill Krivit in Minneapolis, Minnesota in the fall of 1999. 30 people and a half dozen doctors, researchers and care providers attended this first ever gathering to learn more about MLD and the people it affects. In May 2001 the Suhr’s formed the non-profit MLD Foundation as a public benefit charity in the state of Oregon. MLD Foundation then applied for and received 501(c)(3) tax exempt status from the IRS. We renamed our family meetings to the MLD Family Conference™ and in the fall of 2002, we met next in in Pittsburgh, Pennsylvania. We continue to hold MLD Family Conferences and MLD Family Gatherings around North America. We held our first international MLD Family Conference in Munich Germany in March of 2009.
The MLD Family web site, which is the precursor to this MLD Foundation site, was launched on September 11, 2000. You can see an archive of the original site here here. The MLD Family Discussion List was started in 1999, and represented well over 200 families as of the spring of 2009 from over 15 countries and has been the source of just about 10,000 messages of support, information and discussion between the MLD Family members. As of 2018 there are over 350 active families represented on the MLD Family Discussion List.
Current Status – The Suhr Family – Winter 2025
We remember our MLD angel, Darcee, who got her MLD angel wings at age ten, 30 years ago today, as I (Dean) write this in mid-December 2024. We miss her so much.
Lindy, now 44, continues to show physical declines, especially in balance and walking. She lost the ability to climb stairs (with great assistance) about two years ago. With Teryn and my extensive help and support she can “dance” very short distances, but mostly it’s lifting and carrying that gets her around and up & down the stairs of our two story house. Lindy has been active in physical therapy to try to retain what little mobility skills she still has. Safe assisted standing and transfers are so important to good health and her daily care. Her seizures are much more mild and less frequent than a few years ago – a blessing also likely caused by MLD as her brain degrades and there is less to seize.
On her 38th birthday, a true miracle and blessing, we cashed in airline miles and points from all of our MLD Foundation work and celebrated in Hawaii! Lindy loves it there and especially loves being in the surf in her rented Mobi-chair. We now go back every year!
Lindy loves to travel. She attends our annual MLD Family Conference® and visits her sister in Florida as often as we can. In 2011, we took her on the trip of her (and our) lifetime – 5 weeks in New Zealand and Australia! She loved every moment of it – especially the special care from the young waiters and stewards … and Mary, her long-time, no-retired blessing of a caregiver who we took along … and attending the world’s first MLD Family Conferences®which we hosted in Melbourne and Wellington.
Chewing, swallowing, and as described above, mobility are all challenges. We know/fear the myelin damage is approaching her brain stem. As more and more of the brain is destroyed by MLD we continue to see basic body function problems creep up with her – but she still smiles, kisses, and communicates with us through facial expression and occasional squeals of excitement.
She is wheelchair bound, requires 1-on-1 supervision, full help bathing (2-person job), dressing, & eating, and loves to be on the periphery observing any sort of activity. In 2016 she had to move from the wonderful group home she had been in for over 15 years (another blessing) when the owner/operator retired. Lindy’s new mid-week home is more medical capable, and provides great care and respite for us between weekends at home.
Jclynn, our middle daughter, continues to live too far away in Florida. Our three grand kids, now young adults are scattered about attending college and working. Jclynn is not a carrier and my brother doesn’t have any kids, so MLD is stopped in our family.
We remain blessed and are trying to give back as best we can through our work with MLD Foundation, are active in newborn screening, rare policy, advancing MLD therapies, and registries (including genomics) to help us better understand MLD.