Day: June 21, 2014
Exciting News :) #linasgotnews
I promise to give a review of the Living Well with MPNs meeting…just not in this entry. Unfortunately the laptop I started writing that article on is out of commission at the moment. As soon as it is back up and running, I’ll post that one…for now though…On to The News I tweeted about the other day!!!
I have been asked by the MPN Research Foundation to attend and present at a meeting in San Antonio, Tx! The meeting is put on by Nord (the National Organization for Rare Diseases), and is for patients and medical professionals. I will be speaking about the need for funding for research, and hopefully be able to share my story with other patients, network, and make some new friends! Are any of you going to be in San Antonio, Tx for the meeting next weekend? It’s Saturday, June 28th, and it’s free! Click on this link for more information, and to register!
In addition to the NORD meeting next weekend, I have also been offered the opportunity to attend Lobby Days in Washington DC with the wonderful people from the MPN Research Foundation, and the OVAC (One Voice Against Cancer). The event will be July 7th and 8th. At this event I will be speaking about the need for federal funding for cancer research, my personal experiences with my cancer. From my understanding, the attendees will be in small groups with other patients, and speaking with congressional aids. The event will take place over 2 days, and from what I’ve seen of the itinerary, it will be a pretty busy couple of days!
Those of you who know me personally are probably aware that I have always been terrified of public speaking. However, as nervous as I may be, I can not even begin to express how very excited, thrilled, and grateful I am to have been asked to attend these events. I would like to take this opportunity to thank the MPN Research Foundation for their trust in me, I will do my very best to represent the group, and the subject matter to the best of my ability!
My strongest passions in life are patient advocacy, and promoting the education of patients. I am so excited to have the chance to do just that over the next couple of weeks!
This time 3 years ago, I had attended one patient event, since the time of my diagnosis…this summer I’m attending 3 patient events in a month!
I apologize for the raving/rambling here…I am just so very excited about the upcoming events. I am hoping that some of you will be there! Please comment and let me know if you will be in attendace!
As always, you are your own best advocate. If you do not take care of yourself, who will?
Until next time,