AGENDA - 2024 MLD Family Conference®

The 2024 agenda will be somewhat similar to the 2023 agenda (shown below).  Please check back in late March for the 2024 DRAFT agenda.

2024 MLD Family Conference®

Tentative Agenda – Subject to change – All times CDT(Chicago)

Additional Conference Information & Details: click here

Friday

8:30 AM

Registration Opens – Children’s Program/Respite Room opens

Light Continental breakfast

9:00 

Welcome & Introductions

Cara M. Weismann PhD – U Penn Orphan Disease Center
Conference Facilitator

9:05

MLD Foundation Update

Dean Suhr – President, MLD Foundation *

Teryn Suhr – Executive Director, MLD Foundation *

9:15

MLD Family™  Liaison Program

Teryn Suhr – Executive Director, MLD Foundation *

Nicole & Mike DiStefano – MLD Family  Liaisons™

9:20

MLD Family Introductions

everyone

RESEARCH, THERAPY & CLINICAL CARE UPDATES

9:50

MLD Research, MLDi, & Lenmeldy™ approval & label

Laura Adang MD PhD, Children’s Hospital of Philadelphia

10:10

Orchard Therapeutics Update & Orchard Assist

Bennett Smith MBA – SVP, GM, North America Market Access, Orchard Therapeutics

Annamarie Dillon MsC – Executive Director, Global Patient Advocacy, Orchard Therapeutics

10:25

Update: Other Therapies 
MLD Patient Powered Registry™

Dean Suhr – President, MLD Foundation *

10:30

Genetic Counseling & IEPs

Gwen Gunn PhD, MS, CGC –Emory University

11:00

MEDICAID … Eligibility, waivers, accessing services, denials, …

Kevin Bagley DHA, FACHE – Former Nebraska Medicaid Director

11:45

Lunch(Friday Industry and academic experts photo)

MLD NEWBORN SCREENING ACADEMY™ – PART 1: SCIENCE & LABS
Identifying Individuals When Therapies are Effective

This session will focus on the NBS screen, its review and approval, NBS as part of  Public Health System

1:00 – 2:30 … Details and presenters will be made available soon.

MLD Newborn Screening Academy

1:00 pm

MLD NBS Pilot Study & Assay Updates

Michael Gelb PhD – University of WA

1:20

RUSP & the ACHDNC – Where Do They Fit In?

Dean Suhr – President, MLD Foundation *

1:40

State Public health, Why states are different, Why new screens take so long, Committees/Decision Making, etc.

Stanton L. Berberich PhD – Program Manager Medical Screening (retired), State Hygienic Laboratory at The University of Iowa

2:10

NBS is a System, Not Just a Blood Test

TBA

2:30

Active Bills & The Legislative Process

Dean Suhr – President, MLD Foundation *

2:40

Break

2:55

Ladies Breakout & Men’s Breakout – A time for those new and for those more experienced on the MLD journey to come together in small, caring, confidential environments

Academia & Industry Breakout – brainstorm of priorities for future MLD research, clinical, and advocacy efforts

Youth Breakout – sharing about how you have coped and adapted on the MLD the journey

5:30

Break & Family Time

6:30

Dinner

8:30 – 12

After Hours with the MLD Family™… 

Saturday

8:00

Buffet Breakfast – Children’s Program/Respite Room opens

8:30 

Day 2 Welcome

Cara M. Weismann PhD – U Penn Orphan Disease Center
Conference Facilitator

MLD NEWBORN SCREENING ACADEMY™ – PART 2: IMPLEMENTING NBS IN YOUR STATE
Identifying Individuals When Therapies are Effective

This interactive session will focus on how we can (and must) implement MLD NBS … labs, public health, and policymakers 

8:35 – 10:00 … Details and presenters will be made available soon.

MLD Newborn Screening Academy

8:35

Who do we engage?

Stanton L. Berberich PhD – Program Manager Medical Screening (retired), State Hygienic Laboratory at The University of Iowa

8:50

State by State – What Does That Mean, & Priorities 

Dean Suhr – President, MLD Foundation *

9:10

Becoming an advocate in your state
Relating to your representative

Randi Clites – Rare Disease Policy Director, Little Hercules Foundation, Former State Representative

9:10

Discussion: NBS Implementation – How can we do this together?

Everyone

10:00

Break

10:10

Group Photo

Remembering Our MLD AngelsMLD Butterfly Ceremony™ – A special remembrance of those who have earned their Butterfly Wings since our last time together … and honoring all of the MLD Angels represented at the Conference

All attendeeswe will live stream the ceremony on the meeting Zoom link and FaceBook Live on the MLD Foundation page.

11:30

Lunch

1:00 pm

Neurological Evaluation & Management

Deepa S Rajan MD – Director, The Program for the Study of Neurodevelopment in Rare Disorders at UPMC (NDRD)

1:45

Cognitive & Speach

Lynn Golightly CCC-SLP – Speech Language Pathologist, UPMC

2:30

Siblings Without MLD

TBA

3:15

Break

3:30

Self-care is Not Selfish

Kirsten Finn BA, BNAT – Connor’s Crusade, ALD mom

4:15

 

Traveling With a Medically Complex Child

Tiffany Hannett – MLD mom

5:00

Wrap Up/Group Hug

Everyone

5:05

Family Time

6:45

Galaxy Parade – call time

Parents with attending MLD children & loved ones

7:00

Galaxy Parade
Celebration Dinner Party 
 

Everyone

10:00 pm

After Hours with the MLD Family™… 

Additional Conference Information & Details: click here