EDS NE MA Support Group and Marfan MA Chapter Reminders and Updates Jon Rodis

There are several other events and activities in various stages of development and once more is known, I will let you all know about them and all their detail and other details on the above as I get them. Plus, all leaders and organizers of EDS groups and organizations, if you have a notice on an upcoming meeting or event email it to me and I will send it to our EDS NE/MA and MA Chapter databases. Also, don't forget to post your upcoming meetings/evets/activities on the Team Up Calendar.

Ex. Our Friends/Collaegues-Meetings/Events Coming Up

April 29 - RI Support Group and Dysautonomia Support Network-Cardi's Furniture-2 pm - 4 pm--DSN President Amanda Aikulola to present.

June 3 - EDS Coalition's Hoofbeats Walk/Run-7:30 am - 12:00 noon

Always feel free to contact me with questions on everything and anything. Hope to see you this Saturday at the Symposium and/or another upcoming activity, event or meeting!

My Best,

Jon

President-Massachuset ts Chapter of the Marfan Foundation

Co-leader-EDS NE/MA Support Group

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  • Hope everyone joins Team Zebra as you have through the years. This year, as I wrote in this post yesterday, Tean Zebra's funds will go to direct EDS research per my negotiations with the Marfan Foundation to help us fund doctors that are doing direct studies on the EDS/collagen matrix. Ex. Dr Hal Dietz perfected the EDS IV mouse model and his work can unlock the pathways and processes that breakdown the collagen component not just in EDS IV but potentially for al types. Team Zebra is now up as of today on the Marfan Foundation site! : )