Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share.
Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group that could have been a massive six, was only four by the time we made it to the room. The group (left to right) had 7, 7, 2 & 2 years survival between them (missing were 6&3). Lovely to meet Andrea Wernsing and Beatrice Larroque and share experience of this tough ride that both had fought their way through; two very tough ladies, in the nicest possible way! It is good to share with people who understand the journey and are ready to help others. The fourth was Nancy Shorter who transplanted at 63, seven years ago.
Also saw three vintage productions, 34, 36, and 34 year transplant survivors of other conditions.
BMTInfonet do an excellent job covering a wide area and organising support, including buddies. Here they create a platform for people to meet and listen to expert lectures that support the attendees and the issues they have to tackle. They have now produced another excellent video of the history of BMT transplant but this time from the patients perspective. They then produced the lady who, as a nine year old, donated bone marrow cells (twice) for her baby brother, the first ever non twin transplant, to speak to us.
Really interesting meeting nice people who walked similar paths to get where they are today. Next year is Orlando. This plus Disney? Have to go!
MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups
Has anyone had a bone marrow transplant who has PV? 
tasquinimod in myelofibrosis (MF)
Newly diagnosed Myelofibrosis
Stem cell replacement 
