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 - 2025 MLD Family Conference®
v2 – Subject to change – All times EDT (Atlanta)
Additional Conference Information & Details: click here
Friday
8:00 AM
Registration Opens, Continental Breakfast available – Foyer by Grand D
Children’s Program/Respite Room opens – Chattahoochee C
9:00
Welcome & Introductions
Cara M. Weismann PhD – U Penn Orphan Disease Center
Conference Facilitator
MLD Family Introductions
Everyone
Teryn Suhr – Executive Director, MLD Foundation *
Dean Suhr – President, MLD Foundation *
THERAPY & RESEARCH UPDATES
10:00
Orchard Therapeutics Update
Annamarie Dillon MsC – Executive Director, Global Patient Advocacy, Orchard Therapeutics
10:15
Reimbursement
Dean Suhr – President, MLD Foundation *
10:30
Addressing the Future –
• MLD Foundation’s Priorities
• Emerging Research – Gemma Gene Therapy
• Other therapies
*
Dean Suhr – President, MLD Foundation *
GemmaBIO – speaker tba
Marc C. Patterson, MD – Pediatric Neurologist; US Chief Medical Officer, IntraBio Inc. * **
MLD NEWBORN SCREENING
This session will focus on the NBS screen status, the RUSP status, and state NBS implementation mechanics …
Where we are!
11:30
MLD Newborn Screening
Teryn Suhr – Executive Director, MLD Foundation *
Dean Suhr – President, MLD Foundation *
12:00
Lunch
ADVOCACY
This session will focus on the importance of your voice and the impact you can make …
The who, what, and how we get it done!
1:30
What is Advocacy?
Federal Engagement
State Engagement
Dean Suhr – President, MLD Foundation *
Teryn Suhr – Executive Director, MLD Foundation *
Everyone … discussion, Q&A
2:45
One Person’s Impact
Lisa Brackbill – Krabbe Mother; Communications and Advocacy Consultant; Associate Director of Advocacy for Patient Advocacy Strategies,
3:00
Break
Breakout Sessions
3:15
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
5:15
Family – free time
Dinner & Evening Activities
6:30
Dinner
8:30 – 12
After Hours with the MLD Family™
Saturday
8:00
Buffet Breakfast
8:30
Children’s Program / Respite Room opens
9:00
Day 2 Welcome
Your Role in Improving Clinical Care and Research
Cara M. Weismann PhD – U Penn Orphan Disease Center
Conference Facilitator
9:05
The Importance of Genotype / Phenotype Correlation
The MLD Genotype/Phenotype Project
Marc C. Patterson, MD – Pediatric Neurologist; US Chief Medical Officer, IntraBio Inc. * **
Dean Suhr – President, MLD Foundation *
9:30
MLD Patient Powered Registry™
Dean Suhr – President, MLD Foundation *
Everyone – Discussion, Q&A, and Hands On
10:00
Break
10:15
Group Photo – Please wear your Conference shirts!
Everyone
10:30
Remembering Our MLD Angels – MLD Memorial Butterfly Release™ – 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, MLD Family Conference registered livestream attendees should switch to FaceBook for the live stream of this portion of the event.
11:30
Lunch
MLD Journey
1:00 pm
Ideas to Optimize Quality of Life – Medical Care Panel
Marc C. Patterson, MD – Pediatric Neurologist; US Chief Medical Officer, IntraBio Inc. * **
Julie Hauer, MD – Pediatrician, Seven Hills Pediatric Center; Assistant Professor of Pediatrics (Part-time), Harvard Medical School
Kelly Bossola, MSPT – Pediatric Physical Therapist
Elizabeth Hardin, CCLS – Child Life Specialist, Mayo Clinic
1:45
Open Discussion … Q&A
Everyone
2:00
Sibling Experience Insights
Facilitator:
Elizabeth Hardin, CCLS – Child Life Specialist, Mayo Clinic
Panelists:
Jclynn Dees
Carter & Will Hoffmann
Noah King
3:00
Break
3:15
Sharing From the Heart
Everyone
5:15
Wrap Up & Group Hug
Everyone
5:30
Family Time … free time before dinner
6:30
Carnival Parade Call Time
Drop off MLD children & siblings – Chattahoochee C
6:45
approx. 7:45
Carnival Parade – Honoring Our MLD Kiddos
“A Time to Come Together” Celebration Dinner Party
FMLD Piñata Bash™
Downstairs in The Gallery
We will live stream the Carnival Parade and the FMLD Piñata Bash via FaceBook Live for everyone, MLD Family Conference registered livestream attendees should switch to FaceBook for the live stream of this portion of the event.
https://FaceBook.com/MLDfoundation
9:45 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
