2843 E. Grand River Avenue – #230 East Lansing, MI 48823 [email protected] 303-783-0924

Navigator Newsletter

Current and Past:

May 28, 2019 Link: NLMSF Navigator

TOPICS OF THE WEEK:

  • A phase 1 and randomized controlled phase 2 trial of the safety and efficacy of the combination of gemcitabine and docetaxel with ontuxizumab (MORAb‐004) in metastatic soft‐tissue sarcomas – and a special note/reminder about the Patient/Family Message Board for the Research Roundtable Think Tank.
  • How Palliative Care is helping cancer patients – National Health Science article
  • Dance Movement Therapy for Cancer Patients – from the American Society of Clinical Oncology (ASCO) and more . . .
  • Caregiving through the eyes of a Physician
  • Caregiving 101:  Understanding Infection Risk During Chemotherapy

May 14, 2019

TOPICS OF THE WEEK:
*  Measles and Cancer Patients  . . . . .Be Aware
*  A new Lartruvo (Olaratumab) Acess for Patients by LILLY Oncology Pharma
*   Outpatient management of FEVER and NEUTROPENIA in adults

*  Measure Of Treatment-Related Lymphocyte Depletion Helps Identify Patients With Cancer

*  Right combination of diet and bacteria limits cancer progression

*  Just 20 minutes of contact with nature will lower stress hormone levels

Link: NLMSF Navigator

April 30th, 2019

TOPICS OF THE WEEK:

  •  CLINICAL TRIAL ALERT- Recruitment opens in June
  • Novel methods studied for delivery of Doxorbucin to the tumor site
  • The Fluid that Feeds Tumor Cells / The Role of Circulating Nutrients That Fuel Tumor Growth
  • Using Circulating MicroRNA;’s To Distinguish Benign Soft Tissue Tumors from Malignant Sarcomas – Cancer Therapy Advisor
  • CDC Clarifies Position on Use of Opioids in Patients With Cancer

Link: NLMSF Navigator

April 15th, 2019

Topics for the Week:

  • Accept your feelings;   be kind to yourself / Dealing with your Emotions/Oncology Care Team Support
  • Shingles Vaccine and cancer patients –  from Dr. Dale Shepard, MD
  • Soft Tissue Sarcomas:  Assessment of MRI Features correlating with Histologic Grade and Patient Outcome – from the Radiology Society of North America (RSNA)
  • Gut Microbes and the unexpected link to cancer
  • Resource Assistance for many support needs – found in the NLMSF Website: nlmsf.org

Link: NLMSF Navigator

April 2, 2019

Topics of the Week:

  • Two LMS Education Programs in April.
  • Life After Cancer – Tools to consider regarding the fear of a recurrence.
  • The impact of chemotherapy on survival of patients with extremity and trunk wall soft tissue sarcoma.
  • Integrative Medicine – Hand Massage helps with stress during chemotherapy infusion.
  • RARE On the Road – Rare Disease Leadership Tour

Link: NLMSF Navigator

March 26, 2019

HEADLINES

  • Clinical Trial Alert –  ULMS
  • Mind/Body impact on gene activity associated with health and disease
  • Switching on and switching off gene activity
  • The C.A.L.M. Model for person-centered cancer care –  a video and more
  • How sleep affects your mind and body

Link: NLMSF Navigator

March 19, 2019

HEADLINES

  • New Research Shows Progress Toward Identifying Predictive Biomarkers for Immunotherapies Information to be aware of as talking points with your sarcoma oncologist regarding LMS tumor-specific analysis/profiling – from the Cancer Research Institute
  • Oncolytic Virus Immunotherapy for Sarcomas –  Ask a Researcher
  • Survivorship Care Planning-  why it is important and resource information its potential impact for you
  • Living with Cancer-  Patient /  Caregiver information resource, plus a free mobile app – Living with Cancer

Link: NLMSF Navigator

March 13, 2019

HEADLINES

*  Clinical Trial Alert – Study that includes LMS opens in April
*  Dana Farber Insights –  a podcast on the topic of  “Chemotherapy Myths & Misconceptions”
*  Medicare Fraud and how to protect yourself and your family
*  10 Tips for Caregivers-  from Caregiver Action Network
*  Article from MEDLINX  on  Cannabis and medical data about it

Link: NLMSF Navigator

March 6, 2019

HEADLINES

  • Clinical Trial Alert
  • Lift After Cancer –  video
  • What is the Oncology Care Model- and why is it important for our future?
  • Opinion:  How to fight financial toxicity as a result of cancer treatment?
  • Reminder about the SIDE EQ Patient Registry of Side Effects – the LMS Portal established for YOU
  • From the FDA –   FOOD SAFETY TO KEEP IN MIND AS A PATIENT / SURVIVOR
  • MDLINX  Top Research Article Collection on Soft Tissue Sarcoma

Link: NLMSF Navigator

February 26, 2019

HEADLINES:

  • A Future Plan:   Mobile Clinical Trial capability for patients
  • How do Metastatic Tumor Cells grow in lymph nodes?
  • Patient-Centered Communications – Integrative therapies
  • Destination Relaxation / Relaxing Retreats –  resource information
  • Reel Recovery – a Flyfishing Experience
  • Real information about what Palliative Care means and offers to patients and families/caregivers
  • CLEANING ROUTINE – CUTS MRSA INFECTION RISK –  From the Wall Street Journal
  • CLEANING FOR A REASON –   Helps women cancer patients

Link: NLMSF Navigator 

February 19, 2019

HEADLINES:

  • History of the NLMSF Research Support  –  NLMSF Grants since 2002
  • Dr. Richard Riedel,  Duke Cancer Institute, discusses Uterine LMS (2018)  series of youtube presentations
  • Vitamin D research continues for the benefits derived –  MDLINX article
  • Top News in Oncology – Hepatitis screening for Cancer Patients – by Dr. Scott D. Ramsey,  Reuters Health
  • Webinar on Oral health ( the Mouth-Body connection) during cancer treatment –  offered by Triage Cancer
  • THE NEW SARCOMA COALITION –  Service to the Sarcoma Community

Link: NLMSF Navigator

February 12, 2019

HEADLINES:

  • Detection of Circulating Tumor DNA in Patients With Leiomyosarcoma  With Progressive Disease
  • Anlotinib Clinical Trials –  recruiting continues in 8 locations through the country
  • SARCOMA CENTERS OF EXCELLENCE –  Listing and Map provided by Sarcoma Alliance Through Research Collaboration (SARC)
  • Financial Assistance Resource Information
  • VIDEO PRESENTATION: PHYSICIAN TURNED CANCER SURVIVOR –  SHARING ADVICE
  • Cancer Support Community  –  Helpful information for Caregivers during and after treatment is completed for their loved one;  Helpful Caregiving tips from the Henry Ford Health System
  • Journal Summaries from 2018 on soft tissue sarcomas from MDLINX 

Link: NLMSF Navigator

February 5, 2019

HEADLINES:
  •  HEALTH INSURANCE GUIDANCE FROM CANCER SUPPORT COMMUNITY, with  LIVE support from the Cancer Support Community Counselors standing by the dedicated LMS/Sarcoma  Community Helpline to help you.
  • NEW!  *  Sarcoma Center – Specific Clinical Trial site listings –  for      immediate patient access 
  • ASCO Article informing patients with important information
  • Connective Tissue Oncology Society (CTOS 2018)  – recorded LMS    research presentations
  • Dr. Breelyn Wilky’s BLOG – 2018  Research Summary
  • Interview with Dr. Lisa Abbeglen of the Schiffman Lab –  Univ. of Utah
  • An Important Role:   CAREGIVING  –  3 resources: video/workshop information and the NLMSF resource webpage

Link: NLMSF Navigator

January 29, 2019

HEADLINES:

  2nd UPDATE ON LARTRUVO FROM LILLY ONCOLOGY:
*  Additional Update from E. LILLY Oncology Medical Team regarding
   LARTRUVO (olaratumab)*  THE NEW –  SARCOMA COALITION –  its mission and purpose 
   in support of the Sarcoma Community

*  Clinical Trial Alerts –  Recruiting for LMS Patients

N E W:
* THE NEW  NLMSF  SARCOMA TREATMENT CENTER CLINICAL TRIALS LISTING.

N E W:
 In addition  –  the NCI Clinical Trial resource  (Purple Box)
AND CLINICAL TRIALS- GPS to find trials near you
IT IS NOW MUCH EASIER FOR PATIENTS/FAMILIES TO ACCESS THIS TYPE OF  INFORMATION WHENEVER THEY WANT TO SEEK INFORMATION UPDATES ON CLINICAL TRIALS AT SARCOMA CENTERS  OF INTEREST, through the NCI, and for Clinical Trials near them through Clinical Trial-GPS.

    U P D A T E:
  • ANNOUNCEMENT BY The BROAD INSTITUTE of MIT/HARVARD  – the collaboration with THE NATIONAL LEIOMYOSARCOMA FOUNDATION – to take LMS Cell Lines on to the next levels of screening for GLOBAL research expansion. Also, reminder information on how to participate in this program
  • ASK A RESEARCHER –  An interesting study on Check Point Inhibitors –  and its application to LMS
  • DANA FARBER 2018  ANNUAL SARCOMA CONFERENCE  – LINK to the Conference  

Link: NLMSF Navigator

January 22, 2018

HEADLINES:* Two Clinical Trial Alerts  
*   Clinical Trial Yields insights for uterine LMS

*  OncLive presentation  – Jan. 16 – Dr. Suzanne George on the need for ULMS Biomarkers
*   An important Research study on adjuvant chemotherapy for high-grade Uterine LMS
*  Two more research presentations recorded for you at the Connective Tissue Oncology Society Meeting – 2018
 ID’ing the Nuances of Survivorship Care Plans in Gyn Cancer Patients Patient’s coping style appears to make a difference in plans’ efficacy

*  Researchers Developing Chemotherapy “Sponge” To Minimize Toxicity.*  COPING AS CAREGIVER  –  INFORMATION  –  tips / support/ helptool box

*  Detox –   is it a healthy thing to do?  An article to share with your family

*  Important fruits –   Insight into fruits that are helpful to the immune system . . . and more

Link: NLMSF Navigator

January 15th, 2018

HEADLINES

Colds and Flu –  and defending your immune system
ASK A RESEARCHER  about this article and what it means for LMS . . .
Researchers Identify Factors Influencing Response To Pembrolizumab Across Different Cancers.
Reminder about the CANCER LINQ PROGRAM –  VIDEO –   patient-driven impact on precision medicine treatment
Reminder about the TAPUR STUDY – VIDEO –  patient involvement impacts research advancement in precision medicine
Does Medicare cover dental care?   Information and tips for the new year
Discussing Advances in Chemo Brain Treatment
Sarcoma Research Article Update

January 8th, 2018

HEADLINES

Clinical Trial Alert
Research Article Update –  BRCA 1/2 Functional Loss Defines a Targetable Subset if LMS
Tumor Mutational burden and application for LMS –   ASK  A  RESEARCHER

FDA Releases Updated Guidance On Clinical Trials For Oncology.

Thinking about colonoscopies… and the importance of being checked. . .  an article to share with your family

Nonsteroidal anti-inflammatory drugs (NSAIDs) –  what you should know
Exercise after Cancer –  beneficial / enhances survivorship – a reminder article

Link: NMLSF Navigator

January 4th, 2018

HEADLINES

Clinical Trial Alert – from the Italian Sarcoma Group

Connective Tissue Oncology Society (CTOS) 2018 –   Researcher Interviews and two research presentations
Managing hypertension due to chemotherapy
NCCN Guidelines to help with common chemotherapy symptoms
Ask a Researcher
Global Genes Announcement  about the International LMS Research Roundtable
Coping With Cancer

Link: NLMSF Navigator

December 27th, 2018

HEADLINES

Link: NLMSF Navigator

December 18th, 2018

HEADLINES

A special Christmas/Holiday Message from the NLMSF to the LMS Community

Boosting your Memory and your Mood

Special Help Needed? – Reach out to the LMS Community Live HelpLine –
kind, supportive staff on the other end of the line for you

Special Support Ideas to help you through the Holidays

Wings of Life – Medical Air Travel Transport Services – in case you
are out of town and need immediate return home

Link: NLMSF Navigator

December 10th, 2018

HEADLINES

Reminder:   Cancer Care’s Survivorship Workshop –  excellent discussion topics offered –  see topics to be discussed and registration bar to access the Workshop.

ABOUT THE NEW  NLMSF – SPAEN  INTERNATIONAL  L M S  RESEARCH ROUNDTABLE  & THE L M S  COMMUNITY FORUM –  MESSAGE BOARD connecting patients to the Roundtable members.

Talking to patients and families could cut down on harmful medical errors

FROM ASCO: A  Podcast: Communicating With Patients About Financial Toxicity

TRIAGE CANCER –   Cancer Finances –  Navigating Finances after Cancer –  A Tool Kit
Discovery and characterization of recurrent, targetable ALK fusions in leiomyosarcoma | Molecular Cancer Research

Link: NLMSF Navigator

December 4th, 2018

HEADLINES

THE NEW LMS COMMUNITY FORUM – A part of the new  LMS Research Roundtable

Message from an Oncologist

Ask a Researcher  –  About  Larotrectinib  (MD Anderson weighs in)

Helpful Tips on managing scanxiety from cancer survivors –  add your voice as well!

REMINDER:   LMS LIVE CONNECT  – monthly call-in for survivors/caregivers DECEMBER 14   5 pm PST; 6 pm MST;  7 pm CST;  8 pm EST  Contact: [email protected] to rsvp and receive the access codes to participate

OUR LIVE CONNECT TOGETHER IS THE SECOND WEEK OF DEC. instead of the third Thurs. of the month.

Link: NLMSF Navigator

November 27th, 2018

HEADLINES

How to protect your mental well-being during the holiday season

Current Perspectives on Survivorship –  a Cancer Care WorkShop

Guidance on How to Read your Bloodwork / Labs  a video presentation Larotrectenib – for solid tumors –  Ask a Researcher

Holiday Travel Trips – on the Airplane or on the Road

Clinical Trial (in Germany to be aware of         

Link: NLMSF Navigator

November 19th, 2018

HEADLINES

Cancer Care Webinar Alert –  Dec. 11 Survivorship perspectives

Need someone to call Medicare for you?  Medicare Guidance provided

Update information on the Cancer Cell Line Project – and how Patients can move research forward through tumor donation

Why is Pumpkin good to eat –  health benefits for your body from WebMD

Specialized Diet and reducing the risk of cancer –  In The News from MDLINX

Link: NLMSF Navigator

November 13th, 2018

HEADLINES

INSTRUCTIONAL VIDEO FOR CAREGIVERS –  caregiver resource information by Caregiver Action Network and CAREGIVING HELP NOW!

Study of cancer metabolism upends the Warburg effect

Metabolic targets –  a YouTube presentation by Dr. Brian Van Tine

Researchers Develop Novel Two-Pronged Method Targeting Cancer Cells

Telomerase And Chromosomes  – by Research Oncologist

How Much Sugar is Too much Sugar –  by WebMD

Link: NLMSF Navigator

November 6th, 2018

HEADLINES

Clinical Trial ALERTS –  from Columbia University, and the Mayo Clinic (3 locations)

Compassion – the heart of Commitment – Social Security Matters

Preparing for your Consultation / Questions to ask your Radiation Therapist

Update on Trabectedin for soft tissue sarcomas – from the Journal of Clinical Oncology

Special Note from Dr. N. Somaiah from MD Anderson about treatment with Trabectedin

Mobile Communications –  About Medicare Coverage

A new investigational study on EPIGENETICS to treat cancer

Well-being for Caregivers –  To Cleanse or Detox – what are the differences?  Pros & Cons

Link: NLMSF Navigator

October 30rd, 2018

HEADLINES

Clinical Trial Alert for Leiomyosarcoma at Dana Farber and Fox Chase

Reclassify cancers to improve treatment, researchers say

MD Anderson Cancer Center partners with Scripps

Two Clinical Trials to be aware of at the Mayo Clinic for Leiomyosarcoma

Managing Your Cancer Care During a Weather Emergency or Disaster –  Important information to hold  on to for any future weather disaster

Are Generics as good as Brand Name Drugs?

Link: NLMSF Navigator

October 23rd, 2018

HEADLINES

Clinical Trial Phase III at MD Anderson that is currently recruiting
LMS patients.

TRIAGE Cancer –   Webinar link on Insurance Guidance, and

US Map for State Laws for your rights/protection  when you become ill

SURVIVORSHIP CARE PLANNING – Important consideration as treatment is completed

The importance of Cancer Treatment Oral Health Care

Link: NLMSF Navigator

October 16th, 2018

HEADLINES:

REMINDER:  Register for the Moffitt Cancer Center LMS
Patient Education Symposium  – Nov. 3 in Tampa, Florida
Contact Annie Achee at 303  783-0924 or 303  808-3437 or
email:  [email protected] for more info or to register.

Dana Farber Clinical Trial that is enrolling for LMS Patients

In case you missed the special announcement –  The NLMSF  International L M S Research Roundtable initiative

The New SARCOMA COALITION

Glucose Could Replace Toxic Metal Agent in MRI Scans

An Article from ASCO on “Misinformation puts patients at risk.” and a reminder of the  NLMSF Connect With a Clinician Program

WELL-BEING:  What can a good nap do for you?

Link: NLMSF Navigator

October 9th, 2018

HEADLINES:

Clinical Trial –  to be aware of
The NOBEL PEACE PRIZE in Medicine –  awarded to two Cancer
Immunologists who made two key cancer discoveries

Flu Shot Confusion –   CDC guidance from National Jewish Hospital

The DEDICATED LIVE  LMS COMMUNITY SUPPORT HELPLINE – Is Active!

Excellent Guidance Regarding Social Security / Medicare –
Easy to understand, and the HELPLINE can provide further Support You! and an informational webinar on: When the Insurance Company says “NO”  –  helpful Webinar information

MOFFITT CANCER CENTER / NLMSF  L M S PATIENT/FAMILY/CAREGIVER EDUCATION Symposium on November 3.  Registration Details: https://nlmsf.org/facing-sarcoma-together-3

A Recent study on the impact of obesity and sarcoma –  by the University of Iowa with Dr. Mohammed Milhem

Link: NLMSF Navigator

October 2nd, 2018

HEADLINES:

Dr. Robin Jones, renowned sarcoma research oncologist –  Oct. 2  webinar on  Olaratumab in Soft Tissue Sarcoma  (participation information below)

Be Informed / Prepared for the FLU season

New links to clinical trial information from the Stanford Medical Health –   A collaboration with the NLMSF Information to be found in the NLMSF Leiomyosarcoma.info research update website

MOFFITT CANCER CENTER  /  NLMSF partnership for November 3, 2018
L M S  Educational Symposium for Patients/Families/Caregivers (Information Flyer below)

A Webinar by Dr. Rich Haas, Ph.D, Netherlands Cancer Institute,  on the” Role of Radiotherapy in Sarcomas and Recent Developments.”  (Webinar from Sept. 19th)

Clinical Trial –  Recruiting for L M S  PATIENTS:   A Phase III Trial of Anlotinib in Metastatic or Advanced Alveolar Soft Part Sarcoma, Leiomyosarcoma and Synovial Sarcoma (APROMISS)

CLINICAL TRIAL: Phase II that includes  LMS https://clinicaltrials.gov/ct2/show/NCT03114527

Link: NLMSF Navigator

September 26th, 2018

HEADLINES:

NLMSF – MOFFITT Cancer Center partnership for an LMS Education  Symposium

NEW  ANNUAL INTERNATIONAL LMS RESEARCH INITIATIVE LAUNCHED  – Startin in 2019.  An impactful step forward for LMS Research led by the NLMSF

Discovery and characterization of novel, recurrent, targetable ALK fusion in LMS.

Systemic Treatment of Metastatic / Recurrent ULMS

Signs that you are not getting enough Vitamin B6

CAREGIVER REMINDERS

Link: NLMSF Navigator

September 20th, 2018

HEADLINES:

Uterine LMS Study of interest – a possible method to distinguish leiomyosarcoma from leiomyoma

Dr. Costales, Cleveland Clinic –  on the Study of Adjuvant Therapy in Uterine LMS – an OncLive presentation

Revisiting Health Insurance Guidelines for Patients (originally posted last year by the NLMSF)

Dana Farber weighs in on the following topics:

-The Microbiome Emerges as a Hot Topic in Cancer                               (OncLive presentation)
– Can Probiotics help Cancer Patients?
– Can Vitamin D prevent or slow cancer?

Link: NLMSF Navigator

September 11th, 2018

HEADLINES:

*   OncLive Video presentations from renowned research oncologists:  Case Study: LMS and Disseminated Metastases plus  Immunotherapy for Soft Tissue Sarcoma
*  Seeking a second opinion –  it’s important and it is part of what is important in this difficult journey
*  A new and special  NLMSF website – for survivors!  Life Change – “A New Normal”
*  Detox –  an interesting article to be aware of
*  State Governors’ Proclamations for Sarcoma  /  LMS Awareness for July of each year

Link: NLMSF Navigator

September 4th, 2018

HEADLINES:

*   LMS COMMUNITY SUPPORT  LIVE   HELPLINE   –  A VITAL RESOURCE FOR PATIENTS/ FAMILIES/ CAREGIVERS
*  What Patients should know about CANCER  LINQ – its potential impact in oncology
*  CANCER SURVIVORSHIP –  A video presentation with Dr. Lidia Schapira
*  CARE COORDINATION  –  ERROR RISK IN ONCOLOGY –  an interesting study to be aware of
An additional reason to be our own best advocates!

Link: NLMSF Navigator

August 28th, 2018

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August 21st, 2018

NLMSF Navigator

August 13th, 2018

HEADLINES:

* Clinical Trial Alert – at the NIH

*  Clinical Trial at Dana Farber Cancer Institute – Phase 2  – enrolling

*  QUESTIONS TO ASK YOUR ONCOLOGIST ABOUT CLINICAL TRIALS

*  Interview with Dr. Breelyn Wilky, Research Oncologist, Sylvester Cancer Center,  Miami, Florida

*  The Gene – An Intimate History –  an ASCO announcement for a presentation to be released in 2020 on  PBS.

NLMSF Navigator

August 5th, 2018

HEADLINES:

*  ASK THE RESEARCHER  –  Three weigh in on a question

*  Treating Sarcomas in older adults with soft tissue sarcoma –  Dr. Vicki Keedy of Cancer.Net – a PodCast

*   A guide to Immuno-Oncology –  for patients and families/caregivers –  Videos

*  Learn about more LMS Clinical Trials – see link

to listings from the www.leiomyosarcoma.info website

*   “Talking to My Doctor ”  –  guidance to support you –  a Video

*  REMINDER:  CANCER SUPPORT COMMUNITY / NLMSF –  FREE / LIVE SUPPORT HELPLINE COMING SEPT. 1

NLMSF Navigator

July 29th, 2018

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July 22nd, 2018

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July 17th, 2018

Special Helpline Support Service for LMS Patients

July 15th, 2018

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July 8th, 2018

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July 1st, 2018

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Jun 24th, 2018

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Jun 21st, 2018

Webinar Alert

Jun 17th, 2018

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Jun 10th, 2018

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Jun 3rd, 2018

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May 27th, 2018

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Dec 17, 2017

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Sep 04, 2017

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Aug 20, 2017

NLMSF E-Bulletin 

Aug 13, 2017

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Aug 6, 2017

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Jul 30, 2017

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Mar 31, 2017 

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February 26, 2017

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February 25, 2017

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February 23, 2017

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February 19, 2017

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February 16, 2017

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February 13, 2017

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February 12, 2017

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January 19, 2017

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January 15, 2017

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January 12, 2017

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December 29, 2016

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December 18, 2016

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December 09, 2016

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December 04, 2016

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November 27, 2016

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November 20, 2016

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November 14, 2016

Newsletter 5

November 11, 2016

Newsletter 4

November 06, 2016

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October 30, 2016

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September 21, 2016

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September 15, 2016-

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