The 2023 Neutropenia Family Retreat was a great experience! Find resources from the event below:
Presentations
Neutropenia Overview
– Peter Newburger, MD
Congenital Neutropenia
– Jane Koo, MD & Kasiani Myers, MD
New advances in the diagnosis of neutropenia conditions
– Akiko Shimamura, MD PhD
Severe Chronic Neutropenia International Registry (SCNIR / Registry)
– University of Washington
Autoimmune/ Idiopathic Neutropenia
– Zahra Hudda, MD
Stem Cell Transplantation for Severe Congenital Neutropenia
– Kasiani Myers, M.D.
Advances in Treatment
– Peter Newburger, MD
Novel Therapies for Chronic Neutropenia and Barriers for their Development
– David C. Dale, MD
History and Accomplishments of Severe Chronic Neutropenia International Registry (SCNIR)
– David C. Dale, MD
Recordings
Voices of Experience
https://youtu.be/BUyVDo7SEQU
Neutropenia Overview: Dr. Newburger/ Dr. Myers
https://youtu.be/U8SBeFfSMjc
History of SCNIR, current status and moving forward: Dr. Dale/ Dr. Shimamura
https://youtu.be/xGnUj3iR69M
Novel Therapies: Dr. Dale
https://youtu.be/cXKoNVNvggc
CRISPR technology as it relates to Elane SCN; EmendoBio, Asael Herman, Rafi Emmanuel:
https://youtu.be/c7CHj4qAKjc
Thank you to our sponsors!
Platinum sponsor
Supporting Sponsors
What is the Retreat?
We brought our Neutropenia community together in person last summer for the first time since 2018. We may be small as a rare disease, but together we are one big family!
Our goal with these events is to help equip attendees with the skills, knowledge and support you need to manage life with Neutropenia. These in-person retreats have proven to be invaluable, leaving a lasting impression on the lives of individuals with chronic Neutropenia and their families. We look forward to the next one!
Details:
- The opportunity to connect with other individuals/families who are dealing with chronic Neutropenia.
- Presentations from Neutropenia experts and professionals with topics covering chronic Neutropenia in general, management, up to date research findings and ongoing clinical studies.
- Breakout sessions to address the different types of chronic Neutropenia and specific topics; testimony to personal stories of those living with Neutropenia; and more!
- 1:1 consultation with Neutropenia specialists.
- Kids Camp for all kids in attendance ages 4-16 brought to you by The Ella Jewell Foundation and coordinated by professional event planner Kristin McGuinness, her Sparklicious staff, and volunteers. Kids Camp will be in session Friday afternoon and all day Saturday during the presentations and break out sessions for adults (kids will join parents for all meals). We are excited for the kids to get to know each other and enjoy all the fun activities that Kristin and her staff have planned for the weekend!
- Shot parties! Demonstrate your shot technique and learn what works for others.
- A fun, relaxed weekend creating positive memories and developing a support network to help you along your journey.
- Financial Assistance for those who need it. We believe regardless of income, living with a medical condition comes with a financial burden no one should bear alone. Thanks to X4 Pharmaceuticals, we offered more assistance than ever in 2023. We are committed to continuing financial assistance for future retreats.
Questions? Email [email protected]
