Jeanne Zucker currently serves as the Senior Vice President of Healthcare Partnerships for the Muscular Dystrophy Association (MDA) supporting the organization’s mission to transform the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases. Within her recently created role, Jeanne is responsible for forging new relationships with healthcare organizations across a broad range of industries including pharma, biotech, specialty and retail pharmacy, DME and technology. She is also responsible for developing programs that meet the unique needs of neuromuscular disease patients, clinicians and caregivers centered around education, community awareness, and insights. Prior to her role with MDA, Jeanne served as Vice President Client Development for Emerging Markets within the Enterprise Division of athenahealth, a leading provider of cloud-based, network enabled EHR, revenue cycle management, and population health services. Jeanne provided service support to many of athena’s largest clients including payers, hospital based specialty providers, labs, retail clinics, and urgent care operators. Within this capacity, Jeanne served on the Board of Directors of the Urgent Care Association of America (UCAOA) and additionally served as an Executive Sponsor for the Convenient Care Association. Prior to athena, Jeanne held the position of Senior Vice President, Client Relations for InfoMedics, Inc., a health care services organization focused on patient feedback and support programs for the pharmaceutical industry. Before moving into the pharmaceutical industry, Jeanne was with Private Healthcare Systems, Inc. within the managed care industry, where she served in a series of progressive leadership roles starting as Associate Regional Manager and culminating in her role as Vice President, Network Services. Jeanne holds a degree in Psychobiology and Neurobiology from Wellesley College and resides in Portsmouth, NH. An active member of the Healthcare Businesswomen’s Association (HBA), Jeanne has held numerous roles at the chapter and corporate board level including President elect in 2013, President of the Association in 2014, and now President Emeritus.

1. Muscular
Dystrophy
Association
April 2019
1

2. We are committed to
transforming the lives of
people affected by
muscular dystrophy, ALS
and related
neuromuscular diseases
Our Mission
2

3. Through the Years
You Have Known Us
For…

4. 4
We Are Actually Much More…
600K
Visitors to
MDA.ORG
Each Month
,
250K Patients with Neuromuscular
diseases in U.S.
$46B Annual cost
150+ Care Centers in U.S.
90K+ Patient Visits Annually
4

5. Mitochondrial Diseases
Muscular Dystrophies
(e.g. DMD,DM,FSHD,LGMD)
Peripheral Nerve Diseases
(e.g. CMT)
Ion Channel Muscle Diseases
Motor Neuron Diseases
(e.g. ALS, SMA)
Myopathies
(e.g.Pompe)
43+
MDA: The Umbrella Organization
5

6. Advances in the Human
Genome…
Bring Neuromuscular
Disease to the Vanguard of
Medicine

7. 195+
Unique Assets in
Development
14
20
Countries
165+
Companies
Pipeline of Drugs in
Development is Robust

8. 1990’s 2000’s
2010 to
present
Pace of Therapy Development
Accelerated
*Research supported by MDA
ALS Riluzole* Pompe Myozyme*
Pompe Lumizyme*
PP Keveyis*
DMD Exondys 51*
SMA Spinraza*
DMD Emflaza*
ALS Tiglutik*
ALS Radicava
MG Soliris
LEMS Firdapse

9. Our Patients Are Living Longer!
9

10. New Leadership
New Collaborative Remit
Active Engagement of Key
Stakeholders
• Our Care Centers and Clinicians
• Our Patients and families
• Major Private and Corporate Donors
• Biotech Companies and Pharmaceutical
Manufacturers
Our Pivot
To Figure Where We Fit

11. Our Conclusion and Major Insights
Neuromuscular Diseases Need the
Foundation and Underpinnings of a
Recognized Therapeutic Category
MDA Must Now Support Patients
throughout Their Lives and into
Adulthood

12. 12
Innovations in Innovations in
Thinking about Execution of Our Mission Differently…

13. Innovations in Science
MDA is the largest source of
funding for neuromuscular
disease research outside the
federal government and has
invested more than $1 billion
since its inception
Research supported by MDA is
directly linked to life-changing
therapies across the span of
neuromuscular diseases
DATA CENTRIC
TECHNOLOGY
AT THE CORE
MOVR is the first and only data
hub that aggregates clinical,
genetic and patient reported
data for multiple neuromuscular
diseases to improve health
outcomes and accelerate drug
development
13

14. Moving from a Registry to a Cloud Based Data Hub
Original Registry
● On Paper
● Early Platform
● Four Diseases
● Clinical Information
● Manual Data Entry
● Limited Sites
14
The NeuroMuscular Observational Research
Data Hub (MOVR)
MOVR
State of the
Art
Technology
Platform
Multiple Data
Sources
Data
Collection &
Care
Management
EHR
Enabled
Clinical Information
Whole Genome Sequencing
Patient Report Outcomes
Apps
Wearable
Digital Devices

15. Innovations in
15
MDA COMMITMENT TO
CARE CENTERS
We support the largest network
of multidisciplinary clinics,
providing best-in-class care at
more than 150 of the nation’s
top medical institutions
RECREATIONAL PROGRAMS
FOR BOTH KIDS AND ADULTS
LIVING WITH NEURO
MUSCULAR DISEASES
Each year thousands of children and
young adults learn vital life skills and
gain independence at summer camp
and through recreational programs,
at no cost to families
OUR COMMITMENT TO
PROGRAMS AND ONLINE
RESOURCES
Our Resource Hub serves the
community with one-on-one
specialized support and we offer
educational conferences, events,
and materials for families and
healthcare providers

16. Camp for Kids to Recreational Programs for All
Camp
● 4000 Campers Each Year
● 60 Weeks of Camp Annually
● Our Focus - Enjoyment & Vitality
● Opportunity For Kids to Be Kids
● Often Recognized as the ‘Best
Week of the Year’ for Both Kids
and their Caregivers
16
Recreational
Programs
Kids,
Teens and
Adults
Life Skills &
Living
Independently
Program
Curriculum
Multiple
events each
Year

17. Muscular Dystrophy Association
JOIN US
Volunteer
Run &
Walk
with Us
DONATE
Inspired by Our Story?
Come Along & Give Strength….
On Our Mission to Transform Lives
To Lend a Helping Hand
At Over 200 Events Nationwide Each Year
To Help Us Fulfill Our Mission

18. 18
THANK YOU!
Visit Us @ MDA.ORG