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AGENDA - 2023 MLD Family Conference™
Tentative Schedule – Subject to change
Friday, July 14th
9:00 AM
Registration Opens
Children’s Program/Respite Room opens
Light Continental breakfast
9:30
Welcome
Dean Suhr, President, MLD Foundation **
Teryn Suhr, Executive Director, MLD Foundation **
10:00
MLD and lt’s Relationship to the Lysosome
facilitated by
Marc Patterson MD, Mayo Clinic **
Dean Suhr – MLD Foundaiton
10:45
Break
11:00
Updates on Research/Therapies
TBD
12:30
Lunch (Friday Industry and academic experts photo)
2:00
MLD NBS Academy
TBD
3:00
Using your Voice/Advocacy Involvement
Making A Difference
TBD
4:00
Break
4:15
Ladies Breakout, Men’s Breakouts – A time for those new and for those more experienced on the MLD journey to come together in a small, caring, confidential environment
Academia & Industry Breakout – brainstorm of priorities for future MLD research, clinical, and advocacy efforts
5:30
Family Time
6:30
Dinner
9pm – 12
After Hours with the MLD Family™…
Saturday, July 15th
8:00
Buffet Breakfast
9:00
Registration opens
Children’s Program/Respite Room opens
9:30
Inclusion Possibilities for your MLD child
TBD
10:30
Anticipatory Grief
TBD
11:15
Break
11:30
Group Photo
12:00
Lunch
1:30
Remembering Our MLD Angels – Butterfly Ceremony – A special remembrance of those who have earned their Butterfly Wings since our last time together (2019)… and honoring all of our MLD Angels
All attendees … we will live stream the ceremony
3:00
Communication/ACC
4:00
Group Panel/Discussion
What’s On Your Mind?
TBD
5:00
Wrap Up/Group Hug
Everyone
5:15
Family time
6:45
Celebration Parade – call time
Everyone
7:00
Celebration Parade, Closing Party
Everyone
10-12
After Hours with the MLD Family™…
** Member of MLD Foundation’s Medical and Scientific Advisory Board (MSAB) or the ** MLD Foundation Board (fiduciary)
Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS
Thank you to our generous sponsors and grant providers who through their generous support make this conference much more affordable for the attending families. We anticipate and want to thank in advance the families who individually donated to support of our conference scholarship fund.