8:00 AM
Registration Opens, Continental Breakfast available
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®
AGENDA - 2024 MLD Family Conference®
Final Agenda v1 – Subject to change – All times CDT(Chicago)
Additional Conference Information & Details: click here
Friday
8:30
Children’s Program/Respite Room opens
9:00
Welcome & Introductions
Cara M. Weismann PhD – U Penn Orphan Disease Center
Conference Facilitator
MLD Foundation Update
Dean Suhr – President, MLD Foundation *
Teryn Suhr – Executive Director, MLD Foundation *
Introducing the MLD Family™ Liaison Program
Teryn Suhr – Executive Director, MLD Foundation *
MLD Family Introductions
Everyone
RESEARCH & THERAPY UPDATES
9:50
MLD Research & Treatments
Laura Adang MD PhD – Children’s Hospital of Philadelphia **
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
Other Therapy Updates
MLD Patient Powered Registry™
Dean Suhr – President, MLD Foundation *
MLD Journey – Part I
10:30
Navigating the Educational System: IEPs and Related Resources
Gwen Gunn PhD, MS, CGC – Emory University
MEDICAID … Eligibility, waivers, accessing services, denials
Discussion
Kevin Bagley DHA, FACHE – Former Nebraska Medicaid Director
Everyone
11:30
Lunch – (Friday Industry and academic experts photo)
MLD NEWBORN SCREENING ACADEMY™
PART I : “The What” … SCIENCE & LABS
This session will focus on the NBS screen, its review and approval, NBS as part of Public Health System … the What!
1:00 pm
MLD NBS Pilot Study & Assay Updates
Michael Gelb PhD – University of WA
RUSP & the ACHDNC – Timeline & Where Do They Fit In?
Dean Suhr – President, MLD Foundation *
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
Recap – The NBS Ecosystem … Pulling It All Together
Discussion
Everyone
Policy & Legislation
2:30
Active Bills & The Legislative Process
Dean Suhr – President, MLD Foundation *
2:40
Break
Breakout Sessions
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
5:30
Break & Family Time
Dinner & Special Event
6:30
Dinner
8:00
Special Event for In-Person attendees … details to be announced
8:45 – 12
After Hours with the MLD Family™
Saturday
7:30
Buffet Breakfast opens
8:00
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 II : “The How” … ADVOCATING FOR NBS IMPLEMENTATION IN YOUR STATE
Identifying Individuals When Therapies are Effective
This very interactive session will focus on how we can (and must) help to implement MLD NBS … labs, public health, policymakers, and more … the How!
8:35
Who do we engage & what are our goals?
Stanton L. Berberich PhD – Program Manager Medical Screening (retired), State Hygienic Laboratory at The University of Iowa
Your voice and your story impacts change. How to relate to and engage your representative
Randi Clites – Rare Disease Policy Director at Little Hercules Foundation, Former State Representative
State by State Implementation – resources, priorities, focus, persistence, & collaboration
Dean Suhr – President, MLD Foundation *
Cara M. Weismann PhD – U Penn Orphan Disease Center
Discussion
Everyone
9:55
Break
10:10
Group Photo – Please wear your Conference shirts!
Everyone
10:20
Remembering Our MLD Angels – MLD 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
We will live stream the ceremony via FaceBook Live for everyone, and on the MLD Family Conference stream for registered attendees
11:30
Lunch
MLD Journey – Part II
1:00 pm
Neurological & Cognitive Management and Resources
Deepa S Rajan MD – Director, UPMC Children’s Center for NeuroGenomics
Lynn Golightly CCC-SLP – Speech Language Pathologist, UPMC Children’s Center for NeuroGenomics
2:15
Break
2:30
Meeting the Needs of Adolescent Siblings
Jenni Rogers MS, CCLS – Child Life Specialist …VIRTUAL
3:15
Self-care is Not Selfish, It’s Essential
Kirsten Finn BA, BNAT – Connor’s Crusade, ALD mom – Parent Support Program at Mercy General
4:00
Traveling With a Medically Complex Child
Tiffany Hannett – MLD mom…VIRTUAL
4:45
Wrap Up & Group Hug
Everyone
5:00
Family Time … free time before dinner
6:45
Galaxy Parade Call Time– Salon D & E
Drop off MLD children & siblings
7:00
Galaxy Parade
Celebration Dinner Party
We will live stream the Galaxy Parade via FaceBook Live for everyone, and on the MLD Family Conference stream for registered attendees
10:00 pm
After Hours with the MLD Family™
* Member of MLD Foundation’s fiduciary Board
** Member of MLD Foundation’s Medical and Scientific Advisory Board (MSAB)
Additional Conference Information & Details: click here
