NLMSF E-Bulletin January 29, 2017

NLMSF E-Bulletin

Sunday,  January 29, 2017

HEADLINES:

* THE MATCH TRIAL
*  WHEN HOLIDAYS HURT
*  FEBRUARY 28  –  National Rare Disease Day
*  Thank you . . . 

THE MATCH TRIAL:

This is a Clinical Trial listed on ClinicalTrials.gov  –  to be aware of for discussion with your oncologist for more information.    Knowledge is Power =  Patient Power!

NCI-MATCH: Targeted Therapy Directed by Genetic Testing in Treating Patients With Advanced Refractory Solid Tumors, Lymphomas, or Multiple Myeloma https://clinicaltrials.gov/ct2/show/NCT02465060

This study is currently recruiting participants. (see Contacts and Locations)

WHEN HOLIDAYS ARE DIFFICULT .  . . . 

Valentine’s Day is coming up . . .and it may be difficult . .  .if this might be the case . .  .Empower yourself.  How? Incorporate the special someone in your life or that was in your life .  . .because that person always has a special place in your heart . . .   incorporate that special someone in your plans.  Light a candle to signify a legacy, a presence . . . how has your heart and life been illuminated by someone special who struggled,  who is struggling, who is an inspirational presence in your life?

Journal something -“for your eyes only” –  or if you want to blog or facebook to remember or reflect .  . .it is therapeutic to be able to express yourself.   We all gain something from  the courage, strength, and inspiration imparted by a special message of hope, endurance, love, and respect shared.

Practice self-love too  – pay attention to “YOU.”  The people who care/cared about you – would want you to.  Do something special for you.  You are special!

A suggested book:  “The Human Capacity to Thrive in the Face of Potential Trauma”  by George A. Bonnano, PhD and Anthony D. Mancini.

FEBRUARY 28 –  NATIONAL RARE DISEASE DAY –

How can you make a difference by expressing yourself on this day in your community? For the sake of a special someone,  for yourself as a survivor?  How can family members, friends, co workers, stand with you to do the same?  Spreading the word about LMS as a designated Rare Cancer is important – to let people know that it exists,  how to pronounce it /spell it,  better understand its rarity in the world of cancer.  Sarcomas are 1% of all cancers.  LMS is between 13 – 17% of all sarcomas.    There are several subtypes of LMS, making this form of cancer even more complex and research more challenging as a result.    These are the talking points to be able to spread community awareness.  We can all make the difference – either one person at a time or collectively in groups.  Our young people can help make the difference too!

Create an event that your community can rally around to support you . . . to observe National Rare Disease Day.  Talking about it on Facebook, Blogging, Tweeting . . .can certainly be a start to something more.  
Call if you need support to get started:    Annie   303  783-0924  or annieachee@aol.com.  Call anytime!  Always here for you in any capacity possible.

THANK YOU .  . . . .

Thank you all for your ongoing support – of each other  . .  .  
We are working hard for YOU . .  .as a Patient Compass from initial diagnosis, to navigating treatment, to survivorship after treatment –  guidelines on what to do, what to ask, who to ask, when to ask (through the www.nlmsf.org).  through New patient and family support programs launched in 2016:  LMS LIVE CONNECT CONFERENCE CALL IN – Patient to Patient; CONNECT WITH A CLINICIAN PROGRAM  . . . reflective of the continued mission and purpose of the Foundation . . . and our collective focus on the future –  together to support LMS specific Research. 

Annie Achee –  NLMSF

MOVING FORWARD TOGETHER . . .Focusing on the Future  . .  .REACHING FOR THE CURE- TOGETHER!

Reaching For the Cure Together