MLD FOUNDATION

We C.A.R.E. (™)

West Linn, OR   |  http://www.MLDfoundation.org

Mission

We C.A.R.E.™ ... Compassion for families, increasing Awareness, influencing & funding Research, and promoting Education for metachromatic leukodystrophy, a very rare terminal genetic neuro-metabolic disease where over half the cases affect infants. We are also active in Rare Disease policy, and newborn screening for MLD and other rare diseses.

Ruling year info

2003

President

Mr. Dean Suhr

Co Principal Officer

Mrs. Teryn R Suhr

Main address

21345 Miles Drive

West Linn, OR 97068 USA

Show more contact info

EIN

93-1320953

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Nerve, Muscle, Bone Research (H50)

Nonmonetary Support N.E.C. (G19)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2019, 2018 and 2017.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are working to improve the quality of life for individuals - and the families - of those suffering with, or having lost someone, to MLD. For some that is research into new and improved therapies as well as newborn screening​ for every baby born. For others that is improving clinical care, and for others it's compassion as they lose or after they have lost a loved one.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Compasssion - MLD Family Conference™

MLD Family Conferences bringing together dozens of families, researchers, industry and regulators to learn about and discuss research, therapies, practical care and quality of life for MLD affected families. These are the only regularly scheduled MLD specific conferences and are scheduled in the United Sates and internationally.

Population(s) Served

We are supporting the research-oriented International MLD Initiative.
We are sponsors and facilitators of the MLD Patient-Powered Registry.  We regularly bring together leading researchers and industry to discuss and share their work with each other and families.

Population(s) Served

Our MLD Family Discussion
list is the world's largest gathering of MLD affected families (over
350 active as of 2019). Practical care for those woth MLD is a primary focus of this support system.

We also have periodic announcement emailings to several hundred additional recipients to keep them informed of MLD related research, events, and items of interest.

Population(s) Served

The MLD Foundation meets regularly with the FDA, NIH, NINDS, NORD, Genetic Alliance, and other Foundations to collaborate on projects that either expedite/enable research, and/or have value to affected families.

We regularly visit with regulators (FDA) and legislatures, included an annual day of Capitol Hill to increase awareness and education about MLD with an emphasis on genetic issues, newborn screening, research
funding, health IT, and other topics related to those affected with
and/or researching MLD.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Population(s) Served

No target populations selected

Related Program

Compassion ... Family Support

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

Context Notes

We host an annul MLD Family Conference™ as well as semi-annual RUSP Roundtables.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Expedite clinical trials to FDA and EMA registration. Interest, facilitate, and encourage new research into MLD therapies, develop a MLD Standard of Care, bring the MLD newborn screen from its current pilot study status to proven and then get it approved by the ACHDNC onto the RUSP so we can start implementing newborn screening in the US and worldwide, improve and standardize MLD diagnostics.

Develop and facilitate collaborative work team made up of volunteers from patient families, pharma, other advocacy, and all other parts of the disease ecosystem to achieve these goals. To be efficient we have to understand what is necessary to be successful so we must be active and involved ... and pro-active.

Dean Suhr, President has 40 years of corporate, business development, strategic, marketing, operations, fund raising, and relationship management experience. He is applying these skills and leadership to guide MLD Foundation as it to meets these goals.

MLD Newborn Screen test has been developed and a pilot study was launched in 2016. The MLD Family Registry was soft-launched​ in 2016 - full recruiting started in 2017, and planning is active for summits to address the RUSP application, standard of care development, diagnostic standards and potentially an MLD researcher summit in 2019.

Financials

MLD FOUNDATION
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

MLD FOUNDATION

Board of directors
as of 1/29/2020
SOURCE: Self-reported by organization
Board chair

Mr. Dean Suhr

Dreambuilders Resources, LLC

Term: 2016 - 2017

Rob Teach

US Bank

Dr. Marc Patterson

Mayo Clinic

Teryn Suhr

Dean Suhr

Dreambuilders Resources, LLC

Wilson Smith III

Nike