Dean & Teryn Suhr – combined bio

Dean Suhr, BS – MLD Foundation President & co-Founder
Teryn Suhr, RN –  MLD Foundation Executive Director and co-Founder

Dean and Teryn are parents to three girls, two of whom were diagnosed with MLD in 1995 after a six-year diagnostic odyssey. They lost their youngest daughter, Darcee, at ten years old and are actively caring for their 44-year-old daughter, 30 years post-diagnosis, who continues to regress day by day. 

For the last 24 years, they have been serving MLD families worldwide, optimizing the quality of life for families with MLD loved ones, and helping them access therapies when possible. Like many rare disease parents, the Suhrs know firsthand the effects of learning your child has a terminal disease, searching in vain for a therapy that would save their children’s lives and then suffering the pain of losing them.

Teryn is a retired pediatric and newborn ICN Registered Nurse. Dean is a retired high-tech engineer, business development, marketing, sales, and operations executive applying decades of those skills to rare diseases.

They started their MLD advocacy work in 1999 after co-organizing the world’s first MLD Conference with Dr. Bill Krivit at the University of Minnesota. They host an annual MLD Family Conference® in the US and have hosted numerous international conferences and MLD Family Gatherings™in Australia, Japan, Canada, London, Munich, and several other countries.

In 2005, they first met with a team of gene therapy researchers from Milan. That led to a close partnership gathering natural history and supporting several clinical trials, multiple trips to Milan to work with the research team, several IP transfers, an EMA approval in 2020, and a positive UK Nice review in 2022. The first of many MLD Foundation meetings with the FDA was in 2008. The Suhrs helped pass PDUFA-V in 2012, and Dean was an FDA-invited panelist at the 2014 PFDD on Inborn Errors of Metabolism. MLD Foundation was a key organizer for the MLD PFDD in 2022. Both Teryn & Dean were Expert Reviewers for ICER’s review of MLD (which came out very positive) and were thrilled to shepherd Lenmeldy™, MLD’s gene therapy, to FDA approval in March 2024.

The Suhrs have worked with over a dozen MLD therapy research projects, including transplant, substrate reduction, gene, and enzyme replacement therapies. They are currently actively engaged with three ongoing gene therapy projects. They facilitated the transfer of the MLD mouse model to the US to support numerous studies with the dozen or so biopharmas they have worked with over the past two decades. They have attended all but two of the 21 WORLDSymposium™ meetings and have a long history of working with their LSD peers through the Symposium’s COPA and CPAG groups. They are founding members of GLIA, a Leukodystrophy Clinical Trial Readiness RDCRN.

Dean’s involvement in Newborn screening started in 2010 when the first RUSP was released, and he has attended most of the ACHDNC advisory committee meetings since then.  Teryn became very active in MLD Newborn Screening in 2011 when she first started working with Professor Gelb (U.WA) to develop an assay for MLD. She inspired research into measuring sulfatides in newborn blood spots as a new MS/MS first-tier assay. Moving enzyme activity to the second tier eliminated the pseudo-deficiency problem and resulted in an assay that, after screening over 250,000 babies, has zero false positives.  In 2015, Dean launched the RUSP Roundtable (not MLD-specific) as a forum to bring together key perspectives from the NBS, public health, research, clinical care, biopharma, advocacy, payor, regulatory, and other ecosystems to address current and future opportunities to improve the system.  In 2016, he inspired the language for what is now known as “RUSP-alignment”, tying California’s NBS condition review timeline to the federal RUSP (SB 1095) and setting a legislative model currently covering nearly 50% of all babies screened in the US.

MLD Foundation hosted the first MLD NBS Summit in 2017 to focus the efforts to develop, pilot, and implement MLD newborn screening. This effort continued until August 2024, when MLD Foundation, on behalf of the MLD community, submitted the MLD RUSP Nomination to the ACHDNC. Teryn and Dean are actively engaged in MLD Foundation’s efforts to implement MLD newborn screening both in the U.S. and beyond by addressing state, federal, & international policy, pilots, and regulation. They are working with others in several early adopter states to implement MLD NBS across the US.

The Suhrs have been authors on numerous scientific publications on topics such as Leukodystrophy Standards of Care, MLD NBS assay mechanism, MLD genotype-phenotype correlation & prediction, and have published numerous policy & editorial statements. MLD Foundation is a founding member of Global Genes and the EveryLife Foundation for Rare Diseases, and is a member of ARM, NORD, CAHC, PAPI, RAAP, Genetic Alliance, and numerous other organizations and collaborations.

Policy facilitates much research, regulation, diagnostics, and access & reimbursement. Starting with their first day on Capitol Hill in 2007, the Suhrs travel to DC almost every quarter (and often more frequently) to advance rare disease biochemical, public health, access and reimbursement, privacy, genomics, newborn screening, and other rare disease policies & regulations. They are also engaged in appropriations and state policy. Dean is helping to write Medicaid access legislation with two bills expected to be introduced in late 2024.

Dean is often asked to present to and host small and large audiences on value, newborn screening, policy, and numerous other topics at events such as Legislative Conferences, WODC, NBS Boot Camps, RAAP, etc. He studied electrical engineering, business, and law at the University of Southern California, receiving a BSEE in 1978, and completed a mini-MBA at the University of Florida in 1983.

Teryn is a retired pediatric Registered Nurse and has worked in newborn and newborn intensive care nurseries. Teryn has testified before the FDA and been on other conference panels. While her license has lapsed, her ongoing efforts to support MLD families and her daughter keep her RN skills current, active, and always growing. Teryn received her RN from the LA County/USC School of Nursing in 1978 and studied at UCLA.

The work of the MLD Foundation started in 1999, and the organization was legally formed as a 501c3 charity in May 2001. The Foundation’s mission is We C.A.R.E.® … facilitating Compassion for families, increasing Awareness, influencing & funding Research, and promoting Education for metachromatic leukodystrophy, a very rare terminal genetic neuro-metabolic lysosomal disease where over half the cases affect infants. Now in its 24th year, MLD Foundation works with and collaborates with families, advocacy, public and private payers, public health, basic science researchers, academia, medical & academic institutions, biopharma, government, policymakers, regulators, clinicians, and other public and private partners.