Realtime Translations Available!
We serve the global SDS community - and making our content available in as many languages as possible is a high priority. We are excited to share that real-time translation of the captions will be available on Zoom for the meeting. Instructions will be shared during the meeting.
Supported languages currently include:
Arabic, Cantonese, Chinese (Simplified), Chinese (Traditional), Czech, Danish, Dutch, English, Estonian, Finnish, French (France), French (Canada), German, Hebrew, Hindi, Hungarian, Indonesian, Italian, Japanese, Korean, Malay, Persian, Polish, Portuguese, Romanian, Russian, Spanish, Swedish, Tagalog, Tamil, Telugu, Thai, Turkish, Ukrainian, Vietnamese
Partners and Sponsors
Our programs, including educational programs such as SDS POPS, are made possible through support from our donors, partners, and sponsors. Thank you for making this work possible!
If you or your company would like to support our work through Sponsorships or Donations, please reach out to our development team at gifts@sdsalliance.org.
Agenda
Tentative, subject to change.
All times in ET (New York Time)
1:00 PM - 2:00 PM
Welcome and Patient Stories
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Welcome and meeting/session overview
Dr. Eszter Hars ➲, Mother of an SDS Patient, President & CEO, SDS Alliance
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A young advocate's experience with SDS and her impact in advocacy
Joyce Fitz (high school student with SDS, fierce advocate, and SDS Alliance Youth Ambassador)
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Introduction to the "SDS Film Project" and world premiere of the trailer
Living in the Light (Speaker TBD)
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Meet the families featured in the film
Amanda, Melvin, and Addie
Erika, mom of Elijah
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How can your story make an impact on research, therapy development, your family, and future families affected by SDS
Living Proof Advocacy (Speaker TBD)
2:00 PM - 3:00 PM
A wide range of types of research to help improve patient lives
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How do clinical trials work?
Juliane Mills, Worldwide Clinical Trials
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Clinical trials currently enrolling SDS patients
Dr. Eszter Hars
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Drug Repurposing - The EveryCure approach
EveryCure, a nonprofit project by Dr. David Fajgenbaum
(Speaker to be announced)
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Gene Therapy - Progress for SDS
Dr. Daniel Bauer (Boston Children's Hospital)
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Natural History Studies - The iBMF Cohort Study at the NIH
Dr. Sharon Savage (NIH/NCI)
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Health and Qualitative Research
Dr. Vanessa Merker (Harvard/MGH)
3:00 PM - 4:00 PM
SDS Alliance research collaborations
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Mouse Model Development - Project Updates
Dr. Eszter Hars, SDS Alliance
Jackson Laboratory (Speaker to be announced)
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SDS-GPS: Now LIVE in 5 languages.
Insight from the Global Patient Survey and Collaboration Program
Dr. Eszter Hars, SDS Alliance, PI of the SDS-GPS Program
ClinGen and ClinVar Team (Speaker to be announced)
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How rare is SDS?
Progress in diagnostics, newborn screening, tracking, and more
Dr. Eszter Hars, SDS Alliance
Rare Genomes Project Team, Broad Institute of MIT and Harvard (Speaker TBD)
Genetic Prevalence Study Team, Broad Institute of MIT and Harvard (Speaker TBD)
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Coming soon: New Qualitative Research Study
Ashley Thompson (SDS Alliance)
Grace Lynch (Student collaborator, MGH)
4:00 PM - 5:00 PM
Global Community Coffee Chat
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An exploration of the experiences of siblings of people with SDS
Amy Doyle (Systemic family psychotherapist, NHS CAMHS, UK)
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Open conversation - OPEN TO ALL SDS FAMILIES
Speakers (coming soon)
In alphabetical order
Dr. Eszter Hars
Dr. Eszter Hars, Mother of an SDS patient, and Founder/President/CEO/Science Director of the Shwachman-Diamond Syndrome Alliance. Dr. Hars holds a Ph.D. in Molecular Biology from the University of Medicine and Dentistry of New Jersey, where she studied cancer and leukemia. She has over 20 years of experience in scientific research and the biotech industry. As VP of Regulatory Affairs at CytoVera Inc., a lab equipment developer for hematopoeitic stem cell banking, Dr. Hars was in charge of regulatory approval of medical devices by the U.S. Food and Drug Administration. Dr. Hars has also managed business development as well as customer relationships at Quosa Inc., an information technology company, which was acquired in 2012 by Elsevier, the largest scientific publisher in the world. Currently, Dr. Hars is President of a biotech startup that specializes in developing new tools for various new therapies, including CAR-T cell cancer therapy and beta cell replacement therapy for diabetes. Dr. Hars has been engaged in SDS community building and volunteering wherever possible, since her daughter was diagnosed with Shwachman-Diamond Syndrome (SDS) in 2015. In 2020, Dr. Hars founded the SDS Alliance, a 501(c)(3) nonprofit organization. Through the SDS Alliance, Dr. Hars is dedicated to accelerating the development of new therapies for SDS.