Thank you so much for your interest in our recent Bing-Neel Syndrome support group meeting. Many of you were able to join the Zoom meeting live, while others volunteered to watch the recorded Zoom video [https://youtu.be/XQoqKzMshSI]. Many thanks to all who helped make this possible (the doctors, the IWMF office, The Bing Center for WM, the local support group members who helped plan, and all of you for your patience with me in pulling this together).
This was the first-ever topic specific GLOBAL meeting hosted by the IWMF to focus on something so rare as Bing-Neel. We had over 125 registrations from 11 countries and many different US states.
We chose to make this a Zoom meeting, rather than a webinar, so that participants could meet at least a few other people in the world who share a rare syndrome in break-out rooms. We are so grateful to Dr. Treon and Dr. Castillo for their willingness to meet with us on a Sunday afternoon and answer so many questions. Many of the questions were submitted to them in advance and the answers woven into their presentations.
I would like to commend Julie Davidson, along with Peter Freese in Australia, who are volunteers on the IWMF Lifeline. Click the following link for their contact info (under "Bing Neel"):
http://iwmf.wpengine.com/wp-content/uploads/2020/11/IWMF_LIFELINE-.pdf
Julie says it's OK to text her at her phone number. As a follow-on to the meeting, Julie is trying to develop a list of Bing-Neel patients from around the world so that future news or meeting info can be easily shared. If you would like to be included in the list, please send her a note. There will also be a new Facebook Group set up for Bing-Neel folks specifically! Keep an eye out for that if you are on Facebook.
If you are interested in setting up a consultation at the Bing Center for WM at Dana Farber, you can contact Christopher Patterson at the following email (This email address is being protected from spambots. You need JavaScript enabled to view it.) and he can get you to the appropriate contact people.
You may access the research paper referenced in the discussion by clicking the following link:
http://waldenstroms.com/images/publications/BJH2019BNS-Treon-Castillo.pdf
Please click the following link to view the recorded Zoom video:
Eileen Sullivan
IWMF Eastern Massachusetts (US) Volunteer Support Group leader
Somerville, MA